Is it dangerous not to treat it?

[Kayanne]

I want to say that as a parent, sometimes it is so hard to decide what the right course of action is, and nobody knows your situation except you.... (Not much help I know)!

 

My dd6 started having a PANDAS episode mid/end of April, and when we met with her pediatrician on May 1 it is the first time that I have ever heard of it.

 

Looking back on the past, I strongly believe that she was affected by her brother's previous strep infections and/or her vaccines, but I have no real recollections of exactly when her OCD type of behavior started, so I really can't prove it--we were aware of it. Her symptoms are mostly anxiety, and obsessive thoughts. Because a lot of these behaviors were not really new to us, we were assuming her "shut down" in the spring was because she was having too much of it. You see, we have a family history of anxiety issues--Thank God her pediatrician was willing to make the link between her recent step infections and her behavior!

 

Knowing what I know now....I believe that this is truly her first "disruptive" episode. Her last quarter in kindergarten was not good for her... (You could go back and read my previous posts if you want the details).

 

I wish I had a treatment protocol in place already. It would have saved her weeks of crying and "withdrawing" into herself...It would have saved her from (well-meaning) comments from her classmates about why she wouldn't talk to them any more...It would have saved her from the weeks of not being able to decide anything for herself...

 

We have just finished up six weeks of prednisone, and she is on 100mg azithromycin every day for now....and she is 99% improved, and she seems to be getting better everyday. The prednisone was to help with brain inflammation....

 

Many of the parents on this forum are struggling to find doctors who are willing to help their children.

If your son has another episode that is severe enough, it may be difficult for you to get proper treatment quickly. But if you establish a relationship with a trusted specialist now, then in the future you will be able to your son help sooner. Of course this is all speculation on my part, but it is a point to consider

[michele]

Did Latimer prescribe the azith? She seemed against using that strong of antibiotics. My son has had alot of bowel trouble and she said it could be related to the strong antibiotics Omnicef he has been on for a few years. She did not seem to be for using them as a treatment and said this is a misconception. What did she tell you about the antibiotics longterm?

 

Michele

I want to say that as a parent, sometimes it is so hard to decide what the right course of action is, and nobody knows your situation except you.... (Not much help I know)!

 

My dd6 started having a PANDAS episode mid/end of April, and when we met with her pediatrician on May 1 it is the first time that I have ever heard of it.

 

Looking back on the past, I strongly believe that she was affected by her brother's previous strep infections and/or her vaccines, but I have no real recollections of exactly when her OCD type of behavior started, so I really can't prove it--we were aware of it. Her symptoms are mostly anxiety, and obsessive thoughts. Because a lot of these behaviors were not really new to us, we were assuming her "shut down" in the spring was because she was having too much of it. You see, we have a family history of anxiety issues--Thank God her pediatrician was willing to make the link between her recent step infections and her behavior!

 

Knowing what I know now....I believe that this is truly her first "disruptive" episode. Her last quarter in kindergarten was not good for her... (You could go back and read my previous posts if you want the details).

 

I wish I had a treatment protocol in place already. It would have saved her weeks of crying and "withdrawing" into herself...It would have saved her from (well-meaning) comments from her classmates about why she wouldn't talk to them any more...It would have saved her from the weeks of not being able to decide anything for herself...

 

We have just finished up six weeks of prednisone, and she is on 100mg azithromycin every day for now....and she is 99% improved, and she seems to be getting better everyday. The prednisone was to help with brain inflammation....

 

Many of the parents on this forum are struggling to find doctors who are willing to help their children.

If your son has another episode that is severe enough, it may be difficult for you to get proper treatment quickly. But if you establish a relationship with a trusted specialist now, then in the future you will be able to your son help sooner. Of course this is all speculation on my part, but it is a point to consider

[Kayanne]

Did Latimer prescribe the azith? She seemed against using that strong of antibiotics. My son has had alot of bowel trouble and she said it could be related to the strong antibiotics Omnicef he has been on for a few years. She did not seem to be for using them as a treatment and said this is a misconception. What did she tell you about the antibiotics longterm?

 

Michele

I think one thing to remember is that PANDAS seems to be unique with each child--how could it not be when the brain is involved?

 

Other than a few minor issues as a baby, Becca is very healthy so I do believe that played into her decision to prescribe the azith at half the dose...she was somewhat reluctant to do it...but I asked her to. She was going to perscribe amoxicillian, but my dd had a "side effects rash" from that in April (which Dr. Latimer didn't believe--she thinks it may have been strep related)...I asked her for the azith because I was aware that a lot of the parents on the forum had seen good results with it. In our situation, all six of my family were on an antibiotic at one point, four of us were on antibiotics three times, and my PANDAS daughter was on antibiotics 4 times, and she was reluctant to go with the antibiotics in case she might be creating a resistant strain in our house...all understandable.

 

That morning we had called for the results of her 72 hour throat culture that we had her ped. do, and it was negative; Dr. Latimer felt the infection was cleared, but I had expressed concern that I think my son may be a "carrier" since he has also had impetego twilce....She gave me enough refills to get me to the beginning of Sept.

 

She didn't say this directly, but the general feel that I got from her is that a longer course is needed to be sure the infection is cleared...I have yet to address the long-term use of antibiotics with her.

 

Diana and I have briefly discussed this...I do believe that I will lobby Dr. Latimer to keep Becca on a prophlactic dose of some type of antibiotic...maybe something not so broad spectrum. My Uncle had RF as a child, and he took penicillian for 20 years.

 

I can also understand why she would be reluctant to prescribe antibiotics to your son if his bowel issues may be a result of long term use of them...It sounds like Dr. Latimer is thoughtfully considering your son's situation because it is complicated.

[P_Mom]

Kayanne,

 

Did your Uncle ever have any problems with the Penicillin? Did he get strep on it?

 

Michelle,

 

Dr. Latimer told us the same thing about Zith and the stronger antibiotics....she gave us Penicillin and we are doing well with it so I will stick with it unless/until it fails or my kids need something stronger. I know that some kids would only respond to Zith...so you got to do what you got to do.

My son finished a 5 day steroid burst last week, the changes in him, starting 3 days post burst, are remarkable. He had 0 side effects from it...just improvements.

 

Kelly

[Kayanne]

Kayanne,

 

Did your Uncle ever have any problems with the Penicillin? Did he get strep on it?

 

Michelle,

 

Dr. Latimer told us the same thing about Zith and the stronger antibiotics....she gave us Penicillin and we are doing well with it so I will stick with it unless/until it fails or my kids need something stronger. I know that some kids would only respond to Zith...so you got to do what you got to do.

My son finished a 5 day steroid burst last week, the changes in him, starting 3 days post burst, are remarkable. He had 0 side effects from it...just improvements.

 

Kelly

 

I will find out if my uncle had any issues w/the long term use...I do know that he was also treated with steroids while he was in the heart hospital...saved his life.

 

Right now I am feeling that prednisone is a miracle drug!

 

I'm so glad your son has improved on it!

[bronxmom2]

Wow, this thread really resonates with me, too. My 7 yo son has what seems like a mild version of PANDAS (compared with what many on this board have lived through...) and there are time when I doubt the whole thing.

 

I've been lurking awhile, but I had to respond to this one.

 

Just last week I got into a big fight with my 16 yo stepson, because he's afraid I've destroyed my son's immune system by keeping him on antibiotics so long... he obviously thinks I am imagining the whole thing, probably just don't want to face that my kid is difficult, hyper, obsessive, emotionally intense, etc. (My secret worry, too.) Part of me was simply touched that the teenager cared so deeply about his stepbrother's immune system. I tried to explain the danger of PANDAS if I stopped treating it, but I could hardly bring myself to talk about it, I just feel like I can't even talk about it anymore. He kept saying, "is that really more dangerous than destroying his immune system?"

 

It's so easy to forget what it's like when things are bad.

 

What I really think is that there's a huge spectrum of this thing, as with autism, and that many many children diagnosed with emotional, behavioral problems or ADHD really have brain inflammation caused by PANDAS.

 

I had a conversation with Dr. Rosario Trifiletti, who's very knowledgable about PANDAS, and he said that he believes PANDAS will cause a paradigm shift in our perception of "mental illness"--a radical shift of mental illness as caused by infectious agents. For some reason that comment was very interesting to me.

 

Anyway I have a similar quandary right now... whether it's more dangerous to treat him or not to treat him.

 

I feel like I have obsessed over this kid, his maddening behavior and his brilliance, for so many years... I'm tired.

[EAMom]

Hi Bronxmom...is Dr. Trifiletti seeing PANDAS patients? He's written some good articles in the past but I haven't heard of anyone seeing him recently.

 

Anyway...for us it is no quandry. Mental illness/possible brain damage/anorexia (not to mention incredible family stress and dropping out of school...) vs. antibiotics (which our Stanford immunlogist felt would be safe at our current high dose for years).

[T_Mom]

I hear you on the tired-ness issue Bronxmom-- I know what you mean... I just had a family member visit who had long winded concerns (again) expressed re: long-term use of antibiotics...same type of thing. Even expressed that this must be our "way out" of dealing with behaviors, yikes!

I found it really difficult to talk about, found myself fumbling around for the right words to explain...sad and angry at the same time. Feeling really, really misunderstood by a family member--it hurts. We have considered backing off the current antibiotics (Amox. full strength) but even now there are infrequent symptoms of compulsions, and it seems a slippery-slope once a child starts sliding, in our case.

 

EAMom states it well for our situation, it is choice right now, and seems really, really benign compared to what it keeps at bay apparently.

Hang in there, and give that step-son a hug for his care and concern--

 

...I had a conversation with Dr. Rosario Trifiletti, who's very knowledgable about PANDAS, and he said that he believes PANDAS will cause a paradigm shift in our perception of "mental illness"--a radical shift of mental illness as caused by infectious agents. For some reason that comment was very interesting to me.

 

Anyway I have a similar quandary right now... whether it's more dangerous to treat him or not to treat him.

 

I feel like I have obsessed over this kid, his maddening behavior and his brilliance, for so many years... I'm tired.

[peglem]

I don't know when my daughter's PANDAS started, but I know it was untreated for many years before we recognized what it was. Much of her story is hindsight. At age 3 she was dx'd autistic. Rages and Self Injurious Behavior (SIB) began when she was @18 months old. As long as I can remember she had frequent ear and sinus infections. Once the autism dx was applied, almost all infections were considered allergies (because, as I heard so many times, "these kids" are known to have lots of allergies). Sometimes she would be put on antibiotics, and incidences of SIB decreased. We attributed this to her feeling better and thus being less irritable. This went on for years. At age 7 or 8, she began a slow regression in all skill areas, lost what little speech had developed, had a steady increase in SIB. I remember periods of time when she would rage for hours at a time, with small breaks in between. All these years she had constant sleep issues (OMG, it was soooo exhausting) and eating issues. From age 4 to 10 she was casien/gluten free...we thought it was helping, but now, I just think we were so desperate for something to help, that we really fooled ourselves into seeing what was not there. At age 10, we got a new pediatrician because of a change of insurance companies at work. By this time we had pretty much given up on the medical community who were so eager to shrug off everything as autism related and almost never did anything to help+ we were so, so tired, physically, mentally, emotionally. A series of things came together at the same time we got the new pediatrician- I had heard of PANDAS by that time, but since she'd never been dx'd with strep thought of it as a remote possibility. He asked if we knew what was causing her autism....I unloaded all my frustrations with the medical community at large, explaining to him that nobody we'd ever seen was interested in exploring causation and that, since he asked, I'd sure appreciate some help with that. I requested a strep test, on the outside chance that it was PANDAS (he'd vaguely heard of it, but didn't disbelieve, because he knew strep could cause issues with other organs). He agreed to do the test, which he was pretty sure would rule out strep as a problem-she had no classic symptoms. The rapid tests showed positive almost immediately....he was amazed, that got his attention. He prescribed 14 days of Keflex...she got a lot better. A few days after finishing the antibiotics, the behaviors came back and we returned. The rapid test showed a faint positive (I overheard him discussing with the nurse outside the exam room- she thought it was positive, he thought it was impossible after 2 weeks on keflex). The swab was sent for a culture, which did come back negative. A few months later she returned to school after summer vacation. Behaviors returned bigtime, but we kept thinking it was behavioral and autism...Finally, her teacher suggested that maybe she's sick (even though there were no symptoms of that) so I took her back to the doctor and she tested positive for strep, behaviors subsided with antibiotics. For 18 months the pattern of behaviors/+strep/abx showed pretty clearly that behaviors were linked to +strep tests. The strep always came back a few days after the completion of abx. Then her tonsils were removed, but the strep came back....a few months and several specialists later, she was finally given prophylactic penVK....the strep came back on that. So, she was given a course of zith which evoked great improvements, which disappeared when the penVK was resumed. So she was switched to prophylactic zith.

 

I can't say how dangerous untreated PANDAS is for your child. Maybe it would be enough to very quickly treat any and all infections with antibiotics. In my child's case, I wonder if her rather severe autism is the result of PANDAS striking in infancy, disrupting her development at a very early age. I can't help but see very striking parallels between what happens to older kids who develop PANDAS and autism. In autism, tics and OCD are called self stimulatory behavior...The only difference is older kids have already undergone early childhood development when this strikes, so they are not as developmentally impaired as my child. If I knew then, what I know now.... I hate the idea of abx for life....I don't see another way. And yet, maybe things will not go this far with your child, I'd just say the potential is there. If you don't treat, at least watch very, very closely. I'm not trying to scare you into treatment, just sharing my experience so you can make an informed decision.

[EAMom]

A big "wow".

[Kayanne]

I kept thinking while my daughter was going through this that we were lucky she was not 3 or 4 years younger....I really believe that would have pushed her into an autism diagnosis....Dr. Latimer did say that she feels some kids are getting puhed into ADD or Autism when it is PANDAS.

[thereishope]

When my 5 yr old saw the psychiatrist, she automatically screened him for autism and Asperger's because of the variety of problems he had and the pre-existing speech disorder he had. However, mainly because of his creativity,wide ranges of interest, many of the problems resolving on their own over time, and the fact that prior to his first strep he never would have had reason to be screened, she said he definitely did not have autism or Asperger's. 2 psychologists have also agreed w/ her. I never thought he had it, but it was something they automatically did.Now, I also have a 3 yr old. She has already "established" herself as hitting all milestones, being fine w/ socialization, etc. If she now experienced what my 5 yr old did, I still can't see her as being diagnosed w/ autism because she had the base to compare it to. So, I think what I'm trying to say, as I think this through as I type, is the misdiagnosis would be more likely to happen if the first strep infection and the emergence of PANDAS occurred very young like around 2 or younger.

 

So, anyway, I can see how younger children would be misdiagnosed or can I even say that a younger child's autism or Asperger's was caused by PANDAS? If the strep infection happened very young, prior to social skills emerging and when tantrums are still considered acceptable, and the ped at the time never heard of PANDAS, they would have never had reason for a strep test, and in turn, antibiotics would have never been given. Thus more and more damage would have continued to be done and eventually the label of autism would have been given. This can esp be the case for some of the older children w/ autism if their PANDAS emerged at a time when PANDAS was even less heard of.

 

I guess one question I would have is whether older autistic children have a higher chance of being a strep carrier or a child who does not exhibit symptoms of strep when present.

 

 

 

I kept thinking while my daughter was going through this that we were lucky she was not 3 or 4 years younger....I really believe that would have pushed her into an autism diagnosis....Dr. Latimer did say that she feels some kids are getting puhed into ADD or Autism when it is PANDAS.

[michele]

Maybe PANDAS is a spectrum disorder though and so is PANDAS. It is a pendulum and PANDAS is to the far left in the PDD/Aspergers category. Autism is to the far right. In our case untreated PANDAS went on for five years other then antibioics when we treated an actual infection. Plus he was under two when it strated. Now he has many PDD/ Aspergers traits. I see many of these disorders overlapping with the PANDAS which makes it tricky to define. OCD, ADHD, Tourettes, PDDNOS, plus the mood issues. More and more I am finding autism and pandas together. Here is an article showin the relationship. http://www.klaire.com/images/PANDAS.pdf

 

Here is an article explaining the aspergers/PDD Symptoms of Asperger’s syndrome:http://www.helpguide.org/mental/autism_spectrum.htm

 

 

Asperger’s syndrome is the mildest of the autism spectrum disorders. Unlike autism, speech is not delayed or impaired in Asperger’s. Children with this disorder have good language and verbal skills. They have normal to high intelligence. However, they have problems socializing and communicating effectively with others. Children with Asperger’s syndrome often come across to others as socially “clueless” or eccentric.

 

The signs and symptoms of Asperger’s syndrome include:

Obsession with a specific topic.

Long, one-sided conversations.

Inability to read other people’s reactions or nonverbal cues.

Unusual or inappropriate eye contact, gestures, and facial expressions.

Insensitivity to the feelings of others.

An overly-formal, high-pitched, or robotic speaking voice.

Failure to grasp humor, irony, and figures of speech.

Repetitive routines and rituals.

Clumsy or odd movements.

Sensitivity to light, sound, and pain.

Of all the signs and symptoms, an excessive, all-encompassing preoccupation with a narrow subject or interest (such as airplanes, spiders, or weather) is often the most prominent. A person with Asperger’s may spend a great deal of time memorizing facts or collecting and organizing things related to his or her obsession.

 

Symptoms of PDD-NOS

For children who meet some, but not all, of the criteria for autism or Asperger’s syndrome, a diagnosis of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified)is given. PDD-NOS is also sometimes called atypical autism).

 

The PDD-NOS diagnosis is reserved for kids who have many autistic-like symptoms, but don’t quite fit into the “box” for the other autism spectrum disorders. For example, their symptoms might have started after the age of three, or they may demonstrate repetitive behaviors and abnormal speech, but have better social skills than other autistic kids. In some cases, a diagnosis of PDD-NOS is eventually changed to something else as the child gets older and the symptoms become clearer.

 

Learn more...

A Parent's Guide to Autism: Understanding the Symptoms, Causes, and Early Warning Signs

Autism Diagnosis and Treatment: Getting Professional Help for Your Child

Helping an Autistic Child: Tips for Choosing Treatments and Finding Support

Parenting and Attachment: Bonding for Secure Attachment

 

When my 5 yr old saw the psychiatrist, she automatically screened him for autism and Asperger's because of the variety of problems he had and the pre-existing speech disorder he had. However, mainly because of his creativity,wide ranges of interest, many of the problems resolving on their own over time, and the fact that prior to his first strep he never would have had reason to be screened, she said he definitely did not have autism or Asperger's. 2 psychologists have also agreed w/ her. I never thought he had it, but it was something they automatically did.Now, I also have a 3 yr old. She has already "established" herself as hitting all milestones, being fine w/ socialization, etc. If she now experienced what my 5 yr old did, I still can't see her as being diagnosed w/ autism because she had the base to compare it to. So, I think what I'm trying to say, as I think this through as I type, is the misdiagnosis would be more likely to happen if the first strep infection and the emergence of PANDAS occurred very young like around 2 or younger.

 

So, anyway, I can see how younger children would be misdiagnosed or can I even say that a younger child's autism or Asperger's was caused by PANDAS? If the strep infection happened very young, prior to social skills emerging and when tantrums are still considered acceptable, and the ped at the time never heard of PANDAS, they would have never had reason for a strep test, and in turn, antibiotics would have never been given. Thus more and more damage would have continued to be done and eventually the label of autism would have been given. This can esp be the case for some of the older children w/ autism if their PANDAS emerged at a time when PANDAS was even less heard of.

 

I guess one question I would have is whether older autistic children have a higher chance of being a strep carrier or a child who does not exhibit symptoms of strep when present.

 

 

 

I kept thinking while my daughter was going through this that we were lucky she was not 3 or 4 years younger....I really believe that would have pushed her into an autism diagnosis....Dr. Latimer did say that she feels some kids are getting puhed into ADD or Autism when it is PANDAS.

[NancyD]

A large percentage of children on the autism spectrum have other co-morbid (or overlapping) conditions, such as seizures, allergies, gastrointestinal disorders, immune dysfunction, hyperactivity, obsessive behaviors, anxiety, depression, etc. Many children with ASD have dysfunctional immune and GI systems and are vulnerable to other diseases and disorders. There is a large sub-set of children with ASD who are also diagnosed with PANDAS though we do not know how many. No epidemiological studies have been conducted on children with PANDAS thus far. The so-called “comorbid disorders” are currently considered separately classed disorders that are not technically part of the autism spectrum according to the DSM but they do influence the severity of the ASD condition.

 

Many professionals believe that these comorbid disorders are coincidental and not central to the disorder. I believe it is NOT coincidental. The model of autism as a genetic, brain-based disorder is maturing to encompass new discoveries about how body system dysfunctions contribute to brain dysfunction and together produce autism behaviors. (Martha R. Herbert, “Autism: A Brain Disorder, or a Disorder that Affects the

Brain?” Clinical Neuropsychiatry 2, 6 (2005): 354–379; http://www.autismone.org/uploads/2006/Herb...20handout.pdf.)

 

Regardless of whether or not all these various comorbid disorders are specifically part of autism per se, they clearly negatively affect the child and need to be reduced in order to treat ASD.

 

For more info about this, please see the following books:

The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child (Da Capo Press/Perseus Books, 2009) by Nancy D. Wiseman

Changing the Course of Autism: A Scientific Approach for Parents and Physicians (Boulder, CO: Sentient Publications, 2007)

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders (New York: Ballantine Books, 2007) by Kenneth Bock, MD and Cameron Stauth

 

Full disclosure -- I am the author of the first book listed and I do mention PANDAS. Ken Bock addresses PANDAS in his book.

 

Nancy

 

Maybe PANDAS is a spectrum disorder though and so is PANDAS. It is a pendulum and PANDAS is to the far left in the PDD/Aspergers category. Autism is to the far right. In our case untreated PANDAS went on for five years other then antibioics when we treated an actual infection. Plus he was under two when it strated. Now he has many PDD/ Aspergers traits. I see many of these disorders overlapping with the PANDAS which makes it tricky to define. OCD, ADHD, Tourettes, PDDNOS, plus the mood issues. More and more I am finding autism and pandas together. Here is an article showin the relationship. http://www.klaire.com/images/PANDAS.pdf

 

Here is an article explaining the aspergers/PDD Symptoms of Asperger’s syndrome:http://www.helpguide.org/mental/autism_spectrum.htm

 

 

Asperger’s syndrome is the mildest of the autism spectrum disorders. Unlike autism, speech is not delayed or impaired in Asperger’s. Children with this disorder have good language and verbal skills. They have normal to high intelligence. However, they have problems socializing and communicating effectively with others. Children with Asperger’s syndrome often come across to others as socially “clueless” or eccentric.

 

The signs and symptoms of Asperger’s syndrome include:

Obsession with a specific topic.

Long, one-sided conversations.

Inability to read other people’s reactions or nonverbal cues.

Unusual or inappropriate eye contact, gestures, and facial expressions.

Insensitivity to the feelings of others.

An overly-formal, high-pitched, or robotic speaking voice.

Failure to grasp humor, irony, and figures of speech.

Repetitive routines and rituals.

Clumsy or odd movements.

Sensitivity to light, sound, and pain.

Of all the signs and symptoms, an excessive, all-encompassing preoccupation with a narrow subject or interest (such as airplanes, spiders, or weather) is often the most prominent. A person with Asperger’s may spend a great deal of time memorizing facts or collecting and organizing things related to his or her obsession.

 

Symptoms of PDD-NOS

For children who meet some, but not all, of the criteria for autism or Asperger’s syndrome, a diagnosis of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified)is given. PDD-NOS is also sometimes called atypical autism).

 

The PDD-NOS diagnosis is reserved for kids who have many autistic-like symptoms, but don’t quite fit into the “box” for the other autism spectrum disorders. For example, their symptoms might have started after the age of three, or they may demonstrate repetitive behaviors and abnormal speech, but have better social skills than other autistic kids. In some cases, a diagnosis of PDD-NOS is eventually changed to something else as the child gets older and the symptoms become clearer.

 

Learn more...

A Parent's Guide to Autism: Understanding the Symptoms, Causes, and Early Warning Signs

Autism Diagnosis and Treatment: Getting Professional Help for Your Child

Helping an Autistic Child: Tips for Choosing Treatments and Finding Support

Parenting and Attachment: Bonding for Secure Attachment

 

When my 5 yr old saw the psychiatrist, she automatically screened him for autism and Asperger's because of the variety of problems he had and the pre-existing speech disorder he had. However, mainly because of his creativity,wide ranges of interest, many of the problems resolving on their own over time, and the fact that prior to his first strep he never would have had reason to be screened, she said he definitely did not have autism or Asperger's. 2 psychologists have also agreed w/ her. I never thought he had it, but it was something they automatically did.Now, I also have a 3 yr old. She has already "established" herself as hitting all milestones, being fine w/ socialization, etc. If she now experienced what my 5 yr old did, I still can't see her as being diagnosed w/ autism because she had the base to compare it to. So, I think what I'm trying to say, as I think this through as I type, is the misdiagnosis would be more likely to happen if the first strep infection and the emergence of PANDAS occurred very young like around 2 or younger.

 

So, anyway, I can see how younger children would be misdiagnosed or can I even say that a younger child's autism or Asperger's was caused by PANDAS? If the strep infection happened very young, prior to social skills emerging and when tantrums are still considered acceptable, and the ped at the time never heard of PANDAS, they would have never had reason for a strep test, and in turn, antibiotics would have never been given. Thus more and more damage would have continued to be done and eventually the label of autism would have been given. This can esp be the case for some of the older children w/ autism if their PANDAS emerged at a time when PANDAS was even less heard of.

 

I guess one question I would have is whether older autistic children have a higher chance of being a strep carrier or a child who does not exhibit symptoms of strep when present.

 

 

 

I kept thinking while my daughter was going through this that we were lucky she was not 3 or 4 years younger....I really believe that would have pushed her into an autism diagnosis....Dr. Latimer did say that she feels some kids are getting puhed into ADD or Autism when it is PANDAS.

[T_Mom]

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.