Is it dangerous not to treat it?

[NancyD]

Hi T.Mom,

 

Sue Swedo's role at NIMH has changed over the years. She is now chief of Pediatrics & Developmental Neuroscience Branch at NIMH, which includes autism spectrum disorders. There is much greater demand from the public and a lot more federal funding to study ASD. My hope is that they will begin researching some of the comorbid disorders associated with ASD, like PANDAS.

 

A few years ago I was told by someone at NIMH that they would be studying a subset of children on the autism spectrum who have PANDAS, but then earlier this year I was told by someone else at NIMH that they had no plans to study PANDAS any further. I find this very distressing. We must raise awareness about PANDAS and push for federal funding for research and treatments, similar to the way we are doing for ASD.

 

The current Interagency Autism Coordinating Committee (IACC) strategic plan for ASD research includes "detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes" and "ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention." Hopefully, some valuable studies will come out of this.

 

To meet the diagnostic criteria for an autism spectrum disorder, you must have three core features: impairment in social interaction, impairment in verbal and nonverbal communication, and restricted and repetitive patterns of behavior or interests. The red flags in the second year of life are:

 

Impairment in Social Interaction

--Lack of appropriate eye gaze

--Lack of warm, joyful expressions

--Lack of sharing interest or enjoyment

--Lack of response to name

 

Impairment in Communication

--Lack of showing gestures

--Lack of coordination of nonverbal communication

--Unusual prosody (little variation in pitch, odd intonation, irregular rhythm, unusual voice quality)

 

Repetitive Behaviors & Restricted Interests

--Repetitive movements with objects

--Repetitive movements or posturing of body, arms, hands, or fingers

(Wetherby, A., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C., 2004)

 

If a child shows two or more of these signs, parents should have their child evaluated for possible ASD. You may want to check out the ASD Video Glossary, an online video glossary that I developed in collaboration with Amy Wetherby, PhD at Florida State University and Autism Speaks to help parents and professionals learn more about the early signs and features of ASD. This glossary is linked from my organization's home page at www.firstsigns.org. There, you will see side-by-side video clips of children with typical behaviors in comparison with children who present red flags for ASD.

 

To date, I have not seen a child diagnosed with PANDAS (who does not have ASD) who displays these signs. However, there is still so much we do not know about PANDAS (or ASD, for that matter). Not enough research has been done.

 

Nancy

 

 

Nancy--I'd be interested in your opinion as to Dr Swedo's move from PANDAs to Autism research now--

any thoughts on the connections? What is your understanding of it?

There is no doubt that during the worst exacerbation our d presented as if she had severe autism.

[Suzan]

OK, I'm really enjoying the discussions of the connection between PANDAS and autism and I too am interested in hearing if S. Swedo's interest in Autism is related. I am a member of another special needs board since my girls were little. I find myself thinking PANDAS for some of these kids who have autism or autism behaviors. I've started thinking over the past week that everyone with a diagnosis on the autistic spectrum should be given a round of antibiotics as a trial, especially if the symptoms in the child seem overly similar to PANDAS.

 

My dd (6) has (or has had) conditions found in autistic children and her Dan! doc has considered both girls on the spectrum. Of course, now they are improving so much with the recent changes we've made... Between the two of them the list goes on for a while.

 

Sensory Processing Disorder

Hand Flapping

Malabsorbtion

Mitocondria markers

Seizures

Allergies

Pulling out hair

Bedwetting

Self Stimming

Hyperactivity

Impulsiveness

Issues with food

Gut inflammation

Obsessions

Sleep disorders

 

There's more but I either can't think of it or can't describe the weird behavior. My girls got strep at a very early age (before 16 months and 12 months). I just wish I had known about PANDAS earlier. I would have known right away that my daughter was pulling her hair out and gagging herself and laughing because of her strep or my other daughter would have horrible tantrums with no sound. Maybe we would have had an easier life so far.

 

Now I'm just rambling.... I know the original post was regarding whether it's dangerous to not treat. I know I can't answer that. But I wish so much that I could have treated earlier. Time, money, pain, suffering, emotional damage, exhaustion..... in no particular order.

 

Susan

[T_Mom]

Thanks Nancy, I appreciate your perspective and experience.

The physical and emotional manifestations of our ds exacerbation last summer resulted in a presentation as if she had severe autism, including some of the aforementioned characteristics. Suzan, I am so sorry you have gone through this--

 

The Swedo video clip (posted earlier on the PANDAs forum) from the DAN conference, Oct. 2008 (I believe) is where I first learned about her move to autism-issues research. That clip is interesting to view. Definitely appears to be on to something-- Good for her--

[thereishope]

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Edited October 18, 2016 by vickie

[T_Mom]

I just read this resource-link from the PANDASNetwork website--

There is a note on the website that states: "Attached is a description of encephalitis syndromes where psychological symptoms are nearly identical to that of PANDAS. This is a publication by Oxford University.

Please read this as precedent-only for psychological symptoms, i.e., in Von Economo's Enceph – for PANDAS-like behaviors, as described by Dale above. In this viral form of enceph, the basal ganglia are assaulted and the viral infection is also present in the brain. Click HERE for the Oxford Encephalitis Article."

http://www.pandasnetwork.org/Enceph-Oxford.pdf

 

I was struck by the fact that the article mentions possible presentation of encephalitis as if schizophrenic. We asked more than one doctor if our d had psychosis during her severe exacerbation. It seems that for most kids the reaction is less severe than some--but when it is severe it can be all encompassing.

[ShaesMom]

[

My gut tells me there's a link to all these kids. We don't know what it is but there's something the same in all of them. Such thorough backgrounds would have to be done, including family trees, to figure out what it is. I don't think it's just a fluke or luck of the draw. Maybe some day, they'll figure what group of kids you need to look out for.

 

Vickie,

 

Myself and another Mom are working on what we think may be that possible link. Hopefully, in the next couple of weeks we will know more information and be able to share where are thoughts are leading us.

 

I think your gut is definitely right!!

 

Sam

[NancyD]

I defintely do not think it is a fluke or luck of the draw. There is a tremendous increase in the prevalence of ASD, AD/HD, allergies, asthma, autoimmune disorders, bipolar, OCD, tourette's, anxiety disorders, learning disabilities, and so many other disorders and diseases. I think bacterial and viral infections, toxins, and other environmental influences can trigger tics, obsessions, compulsions, anxiety, hyperactivity, developmental delays, and other medical problems.

 

Regarding a comment earlier that all children with ASD should be given antibiotics to see if their ASD symptoms improve -- many parents feel strongly that antibiotics given at an early age due to ear infections or other bacterial infections compromised their child's immune system in the first place and may have triggered the ASD.

 

In the case of my own daughter, I can see clearly in her early video footage around 3 months that she was on the autism spectrum. I believe that soy formula, which I later discovered she was highly allergic to, was a link to her compromised immune system. In addition, I had annual flu vaccines (no doubt they had mercury in them) right up until I got pregnant.

 

Without question, she had autism in the first three years of life -- and although she had restricted interests and repetitive behaviors, they were not obsessive (there is a difference). She did have gastrointestinal problems and allergies, but she never had a tantrum, tic, obsession, sleep problem, anxiety, etc. until the age of 3 1/2. I can pinpoint down to the week (through her baby books, logs, and diary I kept) when she had an overnight onset of all these symptoms. And if I turn the pages back just one week prior, I see an entry showing she was diagnosed with a staph infection in her hand. I think there is a connection. My daughter has never had a strep throat infection in her life. Still, her strep antibodies were consistently in the 1000-3000 range from ages 7-12 (right up until we began IVIG) when we documented this.

 

Whatever the answers are, I'm sure it is very complex. As with ASD, it may be caused by the interaction of

• genetic factors

• exposure to toxins commonly found in water, air, food, and vaccines; and

• failures in the functioning of the immunological, gastrointestinal, and metabolic systems

 

Nancy

 

[

My gut tells me there's a link to all these kids. We don't know what it is but there's something the same in all of them. Such thorough backgrounds would have to be done, including family trees, to figure out what it is. I don't think it's just a fluke or luck of the draw. Maybe some day, they'll figure what group of kids you need to look out for.

 

Vickie,

 

Myself and another Mom are working on what we think may be that possible link. Hopefully, in the next couple of weeks we will know more information and be able to share where are thoughts are leading us.

 

I think your gut is definitely right!!

 

Sam

[thereishope]

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Edited October 18, 2016 by vickie

[thereishope]

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Edited October 18, 2016 by vickie

[dcmom]

Vickie- It is hard not to look back and think I was in "la la land".

 

I find pandas SO frustrating. Although I certainly count my blessings, daily, now- since dd is relatively healthy and for the most part happy.

 

There is almost no history of autoimmunity, psychological, and/or chronic health problems in mine or my husband's family. I can trace my medical history to my great grandparents for the most part.

 

I really feel that pandas (for my dd) is somehow connected with chronic constipation which she has had since she was in diapers. Sadly, I was naive, and the doctors only tried to "manage" it, not find out the cause. It seems many disorders (autism, ms, etc) are making the gut- brain connection. Maybe food insensitivities?

 

I am also eliminating any toxins from our diet, and next, our home. We always ate a rather healthy home cooked type diet, but now we are completely organic. No artificial anything in the house. I definately feel the increase of artificial ingredients, gmo's and pesticides are not helpful.

[NancyD]

I believe the triggers are external, not genetic. See quote from my book below.

 

The Triggers Are External, Not Genetic

Genetic predisposition can increase risk for any disease or disorder—there is little disagreement about that. There may well be a trend in the general population toward the development of predisposing genetic factors. But this increase cannot possibly exceed the rate of population increase—which is exactly what is happening with the growth of ASD cases.

 

That is to say, even if there were a gradual general weakening of the genetic constitution of Americans, something else must be acting on those weakened bodies to manifest the various behaviors and impairments in development we are calling “autism” or “autism spectrum disorders.”

 

Along the trail of investigating this “something else,” the following becomes clear:

Many children with ASD are physically ill.

Many children with ASD, once specifically tested, are found to have compromised immune systems, abnormal detoxification systems, and imbalanced gastrointestinal systems.

Evidence shows that families of children with autism also have higher rates of autoimmune disease. This suggests that children with autism may have a genetic predisposition for immune system weakness. Indeed, a 2006 study by the University of California’s Medical Investigation of Neurodevelopmental Disorders provides a strong argument for autism’s

immunological basis.3

Because of their much higher incidence of illness, children with ASD have a higher usage rate of antibiotics and other medicines. Combined with increasing levels of toxins in the general environment—taken in through air, water, foods, mother’s milk, etc.—it is easy to see how young, developing immune systems can become easily overwhelmed.

 

For example, there is clear evidence that the beneficial bacteria found in the gastrointestinal (GI) tract are killed off rapidly by exposure to a wide variety of antibiotics and environmental toxins. With their loss, harmful bacteria and fungi are free to multiply and cause damage to the mucosal lining, which protects the intestinal walls. The weakened defenses in the GI tract permit the entrance into the bloodstream of foreign or incompletely digested substances that set off immune responses (allergies) or cause other complex physical disorders.

 

Many children with ASD have abnormal detoxification systems. This impairment or disabling of the system has been clearly associated with exposures to mercury—usually in the easy absorbed form of ethyl- or methyl-mercury. These highly toxic substances come from a variety of sources in the environment including some vaccination preparations that use these chemicals as a preservative.

 

The question of mercury exposure is especially important because there are extraordinarily close parallels between the consequences of mercury poisoning and the signs and symptoms of autism. These parallels are quite dramatic across a wide range of categories: psychological phenomena, sensory abnormalities, speech and language deficits, motor disorders, cognitive impairments, unusual behaviors, physical body disorders, biochemistry disruption, immune system dysfunction, central nervous system pathology, neurochemistry, and neurophysiology. Indeed, the evidence against mercury is quite damning.4 Treatment through a large variety of methods can yield good results in mitigating impairments in behavior and development commonly associated with ASD.5

 

So what is this all telling us?

Dr. Jepson calls this the “multiple hit hypothesis”: “The most likely scenario for the development of this disease involves a series of negative responses to the environment in a baby who is at risk genetically.”6

 

The First Year®: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child by Nancy D. Wiseman (Da Capo Press/Perseus Books, 2009), pg 102-104, Reprinted with permission

 

Nancy

[thereishope]

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Edited October 18, 2016 by vickie

[dcmom]

Nancy,

 

Everything you have said makes sense. What type of testing do you think is helpful to isolate the cause of pandas. Do you think it is possible to minimize those causal factors to help to reduce the pandas symptoms?

 

We just started seeing a DAN. He has ordered a stool test, and we are doing a temperature test (Wilson's thyroid).

 

What is an immunological work up? I assume it is bloodwork. Is it helpful- even if the immunologist doesn't believe in pandas?

 

 

PS: Thank you to everyone on this forum. It is so helpful to my state of mind to be able to have meaningful and understandin conversation about this. Even the most well meaning family members just cannot understand this...

[NancyD]

Sorry, Vicki, that passage was rather dense. No matter what the diagnosis, the book will help parents in getting a second opinion, confirming and embracing the diagnosis, assembling a team of professionals, navigating long wait lists, understanding your child's individual profile, understanding underlying biomedical factors, finding the right biomedical specialist, accessing EI and school services, knowing your legal rights and your insurance plan, advocating for your child, identifying co-existing conditions, peeling away the layers, etc.

 

Yes, I am saying that the outside triggers that are causing ASD and other disorders may be the same ones that are causing PANDAS. I don't necessarily think that PANDAS is an "undiscovered form of autism that remains latent until a strep infection". I'm just saying that outside environmental toxins, when combined with your unique set of genes, are causing specific immune, gastrointestinal, and/or metabolic problems that, in turn, are affecting the brain.

 

Nancy

 

I have "Mommy brain" so I may have to reread that a few times

 

I think I understand how that relates to autism, but how about PANDAS? The outside triggers that cause ASD may be the same ones that cause PANDAS? That would make sense. Simply because those same triggers can cause a variety of problems. I think I'm getting in over my head here. Is it leading to say that PANDAS may be like an undiscovered form of autism that for some reason remains latent until a strep infection (or I should say, for most, a strep infection) comes along and can also, in theory, go into remission? For this form, strep is the straw that broke the camel's back?

 

Maybe I should just get your book Even though my son doesn't have autism or Asperger's, I feel a connection and I feel like I can definitely learn from educating myself more on the topic of ASD.

 

I think I need to educate myself more before I add more to this conversation

[thereishope]

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Edited October 18, 2016 by vickie