Does Your PANDAS Child Display PDD or ASD Behaviors?

[MomWithOCDSon]

On another thread as well as in the past, we've discussed some how our PANDAS kids, especially during exacerbation, can display PDD, Aspberger and other ASD behaviors. So much so, in fact, that they can be mis-classified, only to have the doctor/psychatrist scratch their head in bewilderment when, once the exacerbation "calms," the kid no longer seems to be PDD/ASD.

 

Glutamate again, my friends!

 

My link

 

Sorry, I couldn't resist!

[smartyjones]

oh nancy -- on my to do list is to try to get a handle on the glutamate issue -- i've kind of zoned out of it b/c it seems so overwhelming but i think is something i need to explore. i was at a talk last night with a DAN dr. i know you've posted a lot -- can you just give me a quick lesson -- i think glutamate is the excitory neurotransmitter that may be in excess in the brain and GABA is the supplement that works to balance that -- ? are there many options for GABA? is there any downside or side effects?

 

 

also -- i asked my siste if she knew anything about glutamate and she questioned if there is some relation to MSG,the g is glutamate, right ? obviously very different, but she has extreme reaction to msg, as does her son, so wondering if that could indicate any connection.

 

 

thanks!

Edited October 12, 2011 by smartyjones

[MomWithOCDSon]

oh nancy -- on my to do list is to try to get a handle on the glutamate issue -- i've kind of zoned out of it b/c it seems so overwhelming but i think is something i need to explore. i was at a talk last night with a DAN dr. i know you've posted a lot -- can you just give me a quick lesson -- i think glutamate is the excitory neurotransmitter that may be in excess in the brain and GABA is the supplement that works to balance that -- ? are there many options for GABA? is there any downside or side effects?

 

 

also -- i asked my siste if she knew anything about glutamate and she questioned if there is some relation to MSG,the g is glutamate, right ? obviously very different, but she has extreme reaction to msg, as does her son, so wondering if that could indicate any connection.

 

 

thanks!

Oh my goodness, I think I've only just scratched the surface of the whole glutamate issue myself; every day (literally), there's new findings rolling out in that regard.

 

My understanding is still very rudimentary, but from what I've gathered (and some of you more scientifically-minded folks chime in here -- fcefxer, I know you're heavily into the glutamate connection, too!), the glutamate thing in terms of behavior issues has sort of two directions available for attack: absorbing excess brain glutamate before it can achieve "toxic" levels, and/or protecting the glutamate receptors (namely NMDA, but there's at least one more, I think) from being activated. On previous threads here, there've been a ton of links about supplements and meds that either help absorb excess brain glutamate (like B12 and melatonin) or serve as agonists to the NMDA receptor (d-cycloserine, lamictal, NAC). The bottom line seems to be that in people who've suffered some form of brain "trauma" or disease (and I would contend that onslaught by microbes due to an inefficient immune system constitutes "trauma"), the glutamate transporters responsible for removing excess glutamate from the brain's extracellular space "flip out" and actually work in reverse, bringing more and more glutamate to that extracellular space. Then the NMDA receptors get more and more activated, and cell death that impacts memory and cognition can occur.

 

Our psych says that "glutamate is the new serotonin" because where there was so much interest in the role of serotonin and mental conditions 10 or 15 years ago, glutamate is consuming the current research. But so much of what's being released these days (like the paper linked in this topic) just rings so true for me experientially, it's hard to dismiss.

 

As for GABA, I have to admit much ignorance in that regard; I haven't researched it or used it, though I know many people do. I know that, like NAC, it is an amino acid, and I know that GABA receptors in the brain work much the same as NMDA receptors in terms of involving sodium channels and being responsible, to an extent, for preventing exotoxicity. GABA-supporting supplements and/or meds intended to increase the amount of GABA available in the brain are anti-anxiety and anti-convulsant formulas, generally. So, from what I can gather, GABA is another brain "chemical" that can contribute to decreasing anxiety, but I haven't seen any direct links between GABA or its supplementation or modulation and glutamate.

 

As for MSG, I've heard of and read about its negative effects on some people, but whether or not orally consuming a form of glutamate can contribute to exotoxicity in the brain due to glutamate, I haven't seen any research thus far that says this is the case. Wiki, however, has a statement that claims that neurologists are studying that specific topic. Generally, I try to avoid it, at least in the foods I buy and prepare at home; haven't gone the extra step to confirm that it's not in the foods we eat in restaurants, take-out or delivery, but then I haven't noticed any behavioral "blips" with DS after any of those meals, either. So either we're getting lucky and not being fed MSG by our favorite local spots, or the level at which it is being consumed isn't problematic.

 

Sorry I'm not better spoken on all this! Like I've said before, if I could go back 20 years and do my education over again, I know where I'd focus now!

[PhillyPA]

Pandas16 - I think you are misunderstanding something. There are diseases that display the same symptoms as autism. NMDA encephalitis is an auto-immune disorder. Read below what was published in the Lancet, July, 2011.

 

 

 

 

 

 

Late onset autism and anti-NMDA-receptor encephalitis The Lancet, Vol 378. Issue 9785, Page 98, 2 July 2011

 

Caroline Creten, MD, Sanne van der Zwaan BSc, Roos J Blankenspoor BSc, Arien Maatkamp, PhD, Prof Jim van Os PhD, Dr Jan NM Schieveld PhD

 

In December, 2009, a 9-year-old boy was admitted to our hospital with an acute onset of secondary generalised seizures. He had no medical or psychiatric history and functioned very well socially and academically. He presented with speech and swallowing difficulties, which after 10 days developed into a severely agitated catatonic state with opisthotonic posturing, tonic posturing of limbs, insomnia, and dyskinesia. Initially the electroencephalogram showed a normal background pattern with epileptic discharges, and oligoclonal bands were present in cerebrospinal fluid (CSF). Brain MRI and extensive blood tests were normal. The neurological diagnosis was atypical childhood epilepsy with centrotemporal spikes, for which oral corticosteroids and anti-epileptic drugs were prescribed. His catatonia was treated with benzodiazepines. In January, 2010, our patient presented in a robotic state with complete mutism and negativism, and he did not respond to any form of contact. We provisionally diagnosed acute late onset autism with a differential diagnosis of childhood disintegrative disorder or early onset schizophrenia.

 

Childhood disintegrative disorder, early onset schizophrenia, and late onset autism often share a final common pathway: previous normal development, followed by sudden neuropsychiatric regression of social interaction and communication skills, and a decline in intelligence and daily activities. 1 The disorders are sometimes misrecognised and collectively called as autistic disorder. Although judged to be functional psychiatric diagnoses, the marked deterioration and poor prognosis suggest an organic cause, especially in children with catatonia, a normal development up to at least 5 years of age, or both1,2. In our patient, late onset autism was considered because: it is associated with neurological disorders; 2 it is a known end stage of acquired brain injury;progression of symptoms was fast and severe, unlike in early onset schizophrenia; the absence of positive symptoms made schizophrenia less plausible; the age of onset and rare prevalence made chronic disintegrative disorder unlikely; 1 and accompanying catatonic features were present. 3 After extensive diagnostic assessments, our patient was finally diagnosed with anti-NMDA-receptor encephalitis on the basis of slightly raised anti-NMDA-receptor antibody titres in serum and highly raised titres in CSF. 4 Clinical characteristics of this condition are acute major neuropsychiatric symptoms including anxiety, aggression, agitation, behavioural changes and catatonia, delusional thoughts, progressive speech deterioration, and hallucinations. Neurological symptoms such as dyskinesia, abnormal seizure-like movements, and diffuse and profound autonomic instability have also been reported.4.5 Anti-NMDA-receptor encephalitis can occur in the context of malignant disease; 4 however for our patient extensive oncological investigations were negative. Electroconvulsive therapy was given for the severe catatonic state, and monoclonal antibody treatment (rituximab) was started because of the unsatisfactory response to the initial treatment with benzodiazepines. The acquired autism gradually subsided, he spoke fluently and was able to draw a happy picture (figure). In June, 2011, he only had some mild cognitive dysfunction.

 

Childhood disintegrative disorder, early onset schizophrenia, late onset autism and all stages of anti-NMDA-receptor encephalitis share core symptoms, as in our patient. We suggest that anti-NMDA-receptor encephalitis might be a possible organic cause underlying these three disorders. Patients previously diagnosed with these diagnoses might need to be re-examined for anti-NMDA-receptor encephalitis. We suggest that forthcoming editions of DSM-5 and ICD-11 exclude and define cases of regressive autism spectrum disorders due to anti-NMDA-receptor encephalitis.

 

Contributors

 

All authors looked after the patient, wrote and contributed equally to the report. Written consent to publish was obtained.

 

References

 

1 Disorders usually first diagnosed in infancy, childhood, or adolescence. In: American Psychiatric Association , ed. Diagnostic and statistical manual of mental disorders. 4th edn, Text revision. Washington DC: American Psychiatric Association, 2000.

 

2 Van Engeland H, Buitelaar JK. Autism spectrum disorders. In: Rutter M, Bishop DVM, Pine DS, Scott S, Stevenson J, Taylor E, eds. Rutter's child and adolescent psychiatry. UK: Blackwell Publishing, 2008: 759-781.

 

3 Schieveld JNM. Section IV Case reports with a child psychiatric exploration of catatonia, autism, and delirium. In: Dhossche DM, Wing L, Ohta M, Neumärker KJ, eds. . London: Academic Press, 2006: 195-206.

 

4 Kayser MS, Kohler CG, Dalmau J. Psychiatric manifestations of paraneoplastic disorders. Am J Psychiatry 2010; 167: 1039-1050. CrossRef | PubMed

 

5 Dalmau J, Gleichman AJ, Hughes EG, et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol 2008; 7: 1091-1098. Summary | Full Text | PDF(635KB) | CrossRef |PubMed

 

a Department of Psychiatry, Maastricht University Medical Centre+, Maastricht, Netherlands

 

b Department of Neurology, Maastricht University Medical Centre+, Maastricht, Netherlands

 

Correspondence to: Dr Jan Schieveld, Department of Psychiatry and Psychology, Division of Child and Adolescent Psychiatry, Maastricht University Medical Centre+, P. Debyelaan 25, PO Box 5800 6202 AZ Maastricht, Netherlands

[airial95]

Okay, so I find the glutamate thing interesting, but this is about the 10th time in less than two weeks that Ive seen PANDAS grouped together with Autism and PDD. This distrubs me so much. They are very different diseases. Autism and PDD involve dysfunction of the cerebellum, lack of understanding emotions and no language development, vaccine damage. PANDAS involves dysfunction of the basal ganglia... now the basal ganglia has an effect on speech, so there can be problems in that area but THEY ARE NOT THE SAME!! Im sorry but it really royally urks me to see these grouped together and I really think its wrong to do so. You can have PANDAS, you can have Autism and PANDAS, you can have Aspergers and PANDAS. 3 seperate entities. If glutamate is involved in all of them, so be it but dont group them together based on that alone.

 

I agree wholeheartedly that they are totally different, but as a parent of a child who was dx with PANDAS at 26 months (with onset at 20 months), the progression at his age looked immensely like autism. Has we not had the amazing pediatrician we did - we may have been written off with an ASD dx and spent the last 2 years on an entirely different (and wrong) path. ASD was a discussion that was had several times in the early months of our PANDAS journey. PANDAS symptoms in a young toddler are hard to differentiate from some developmental autism symptoms - which is why I've always seen a connection between the two - not that they are the same, but in very young children, they can be easily confused and can share a similar symptomology.

 

I should note - my son has NO symptoms of autism now.

[dcmom]

My kids have never displayed autistic or asd symptoms. They are extremely verbal and articulate, and also at ease with showing affection, along with having great ability to "read" others. This never changed, even during exacerbation.

 

Their symptoms have been almost exclusively ocd.

 

I can imagine that if your ocd centered around interaction with others, it could be perceived as autistic.

[airial95]

My kids have never displayed autistic or asd symptoms. They are extremely verbal and articulate, and also at ease with showing affection, along with having great ability to "read" others. This never changed, even during exacerbation.

 

Their symptoms have been almost exclusively ocd.

 

I can imagine that if your ocd centered around interaction with others, it could be perceived as autistic.

 

What's interesting, is my son was very verbal and articulate as a very young age, and he regressed significantly at the time of his onset. This was the big thing that our pediatrician honed in on to say that it likely WASN'T autism, because if it was, he likely wouldn't have been as verbal to begin with. Fortunately our ped saw the regression for himself, and didn't just take our word (because until he started to improve with the PANDAS treatment, we didn't realize just how significant the regression was!).

 

Our son presented initially with primarily ocd and odd symptoms. But from what we know now, in a 2 year old, the compulsions and rituals revolve around OUR actions, and us having to take certain steps, doing things a certain way. If it didn't happen exactly correctly, there was no "starting over" because we never knew what was wrong - it was just a terrible fit of unexplained rage...which can also be mistaken for autism. We're still amazed that our pediatrician saw the OCD through our descriptions of the tantrums! In hindsight - we can see it fairly clearly too but I'm still thankful we have the ped that we do!

[dcmom]

I think one of the biggest problem is that so many do not have any understanding of ocd and how it manifests, including: parents, grandparents, well meaning family, teachers, principals, school psychiatrists, pediatricians, neurologists, etc, etc. I went to my ped (no longer my ped) twice with CLEAR ocd (well, clear to me now), and pretty common young child ocd (toileting rituals), and upon being negative for a UTI her answer was "positive reinforcement". Thank god I have the self confidence to know that nothing I was doing wrong or right was going to affect what was going on, and we kept searching. GGggrrr....

[MomWithOCDSon]

Okay, so I find the glutamate thing interesting, but this is about the 10th time in less than two weeks that Ive seen PANDAS grouped together with Autism and PDD. This distrubs me so much. They are very different diseases. Autism and PDD involve dysfunction of the cerebellum, lack of understanding emotions and no language development, vaccine damage. PANDAS involves dysfunction of the basal ganglia... now the basal ganglia has an effect on speech, so there can be problems in that area but THEY ARE NOT THE SAME!! Im sorry but it really royally urks me to see these grouped together and I really think its wrong to do so. You can have PANDAS, you can have Autism and PANDAS, you can have Aspergers and PANDAS. 3 seperate entities. If glutamate is involved in all of them, so be it but dont group them together based on that alone.

 

First of all, nobody, including me, is saying that if you have PANDAS you are autistic or vice versa. But there DO appear to be points of commonality, and to ignor those is to ignor possible avenues of treatment, IMHO.

 

Secondly, I personally would not refer to either PANDAS or especially autism as a "disease." Autism is just a label slapped on a bunch of regressive behavioral symptoms when no other identified diagnosis exists. It's a "default," and it doesn't accurately speak to anything, really, given the very wide spectrum evidenced under that title. PANDAS, meanwhile, seems to be well-defined in terms of it's being an auto-immune disorder, but pretty much everything else outside of that appears to be up for grabs currently. Again, not unlike autism, you have this very wide array of associated behaviors, patterns of regression (from debilitating to none, as noted by dcmom), comorbidities (again, none to a lengthy, exhaustive list), differing responses to identical interventions, etc.

 

Thirdly, my son, along with several others of my acquaintance, WAS diagnosed with PDD in the depths of a PANDAS exacerbation, but those PDD behaviors have all disappeared with PANDAS -- not autism, but PANDAS -- treatment! So some behavioral relationship would appear to exist, however tenuous.

 

I hear the indignance in your response, and I get it. I've heard it elsewhere, too, when I've noted something that appears to be concurrent or coincidental between "regular OCD" and PANDAS. And it's not just PANDAS parents who don't like having their kids likened to "regular OCD" kids; some "regular OCD" people bristle at the mention of PANDAS, too, as though you're insinuating they've missed something in their treatment regimen and you're blaming them for having OCD rather than taking an antibiotic and making it all go away.

 

None of that is ever, ever my goal. Here's the thing. Each of these disorders -- PANDAS, OCD, autism, TS, etc. -- has this "unknowable" quality about it. Yes, they each now have some "standards of treatment," but everyone's still struggling to understand the full genesis of each disorder, the temporal relationships, triggers, full range of symptomology, behavioral expression, recovery versus remission, failure to recover or remiss in some instances, impact of physical and/or mental maturation, etc. And then there are the commonalities that continue to surface, glutamate being one of them. So is it such a stretch to consider what these disorders share, as well as what sets them apart? Couldn't we learn something from one another in that regard? If, instead, I stick to my side of the street and you stick to yours, we'll never know what we might've had in common or learned from one another because we're running on parallel courses.

 

Incidentally, as you probably already know, some cases of so-called autism have already been found to have auto-immune origins, too, so I can't help but think that any sense of "separation" on that basis is on shaky ground, as well. Consider:

 

Stop Calling It Autism

 

Peace?

[MSmom]

Well said, Nancy. I believe immune and metabolic issues are at the core of all of this stuff, whether it's called autism spectrum, PANDAS, sensory integration disorder, etc. and that there is plenty of evidence of that. Many resarchers believe "autism" is truly an autoimmune and metabolic illness. Kids' "autistic" symptoms often improve with immune treatment, just as PANDAS can improve. All of these disorders probably occur in kids from a similar genetic subset. Different parts of the brain and body, different manifestations. I don't think the label really matters. I'm NOT saying PANDAS kids are "autistic." I do think they all have autoimmunity in common. They are all immune and metabolically challenged kids.

Just my opinion.

 

MsMom

 

 

Okay, so I find the glutamate thing interesting, but this is about the 10th time in less than two weeks that Ive seen PANDAS grouped together with Autism and PDD. This distrubs me so much. They are very different diseases. Autism and PDD involve dysfunction of the cerebellum, lack of understanding emotions and no language development, vaccine damage. PANDAS involves dysfunction of the basal ganglia... now the basal ganglia has an effect on speech, so there can be problems in that area but THEY ARE NOT THE SAME!! Im sorry but it really royally urks me to see these grouped together and I really think its wrong to do so. You can have PANDAS, you can have Autism and PANDAS, you can have Aspergers and PANDAS. 3 seperate entities. If glutamate is involved in all of them, so be it but dont group them together based on that alone.

 

First of all, nobody, including me, is saying that if you have PANDAS you are autistic or vice versa. But there DO appear to be points of commonality, and to ignor those is to ignor possible avenues of treatment, IMHO.

 

Secondly, I personally would not refer to either PANDAS or especially autism as a "disease." Autism is just a label slapped on a bunch of regressive behavioral symptoms when no other identified diagnosis exists. It's a "default," and it doesn't accurately speak to anything, really, given the very wide spectrum evidenced under that title. PANDAS, meanwhile, seems to be well-defined in terms of it's being an auto-immune disorder, but pretty much everything else outside of that appears to be up for grabs currently. Again, not unlike autism, you have this very wide array of associated behaviors, patterns of regression (from debilitating to none, as noted by dcmom), comorbidities (again, none to a lengthy, exhaustive list), differing responses to identical interventions, etc.

 

Thirdly, my son, along with several others of my acquaintance, WAS diagnosed with PDD in the depths of a PANDAS exacerbation, but those PDD behaviors have all disappeared with PANDAS -- not autism, but PANDAS -- treatment! So some behavioral relationship would appear to exist, however tenuous.

 

I hear the indignance in your response, and I get it. I've heard it elsewhere, too, when I've noted something that appears to be concurrent or coincidental between "regular OCD" and PANDAS. And it's not just PANDAS parents who don't like having their kids likened to "regular OCD" kids; some "regular OCD" people bristle at the mention of PANDAS, too, as though you're insinuating they've missed something in their treatment regimen and you're blaming them for having OCD rather than taking an antibiotic and making it all go away.

 

None of that is ever, ever my goal. Here's the thing. Each of these disorders -- PANDAS, OCD, autism, TS, etc. -- has this "unknowable" quality about it. Yes, they each now have some "standards of treatment," but everyone's still struggling to understand the full genesis of each disorder, the temporal relationships, triggers, full range of symptomology, behavioral expression, recovery versus remission, failure to recover or remiss in some instances, impact of physical and/or mental maturation, etc. And then there are the commonalities that continue to surface, glutamate being one of them. So is it such a stretch to consider what these disorders share, as well as what sets them apart? Couldn't we learn something from one another in that regard? If, instead, I stick to my side of the street and you stick to yours, we'll never know what we might've had in common or learned from one another because we're running on parallel courses.

 

Incidentally, as you probably already know, some cases of so-called autism have already been found to have auto-immune origins, too, so I can't help but think that any sense of "separation" on that basis is on shaky ground, as well. Consider:

 

Stop Calling It Autism

 

Peace?

[MomWithOCDSon]

I disagree, those points of commonility are what muddys the water and make the diagnosis incorrect. I think you can say okay both show OCD, but they are both caused by differetn things

 

The illness behind the OCD is caused by a different thing, or the OCD itself is caused by a different thing?

 

If you mean the former, then we're on the same page. If you mean the latter, then, from what I have in hand as of this minute (always subject to change), I guess we'll have to agree to disagree.

[dut]

Hi - just my two cents on PANDAS looking like autism from our experience..

 

my dd closes down touch wise, especially with me during an episode. It isn't OCD based she just gets less cuddly and emotionally connected and way more aggro altogether. I know when things are looking better 'cos amongst other things, she wants to hug and be affectionate and will seek out these interactions. During an episode she will literally shy and pull away when touch is initiated.

 

I don't believe it's OCD - she's very goodat telling me what's going on ocd wise, very open and aware. It's not sensory, we haven't had sensory involvement for her for a couple of years now. It looks very like very low level autistic stuff to my eyes but she's so not like that at her normal baseline.

 

for my ds - when he was maybe 2 1/2, we tried a steroid burst to see if the symptoms we had witnessed were indeed PANDAS. The most "autistic" reversal response i saw was within 12 hours or so of the first dose (our dd's ocd diminished within a few hours of the first dose of steroids on both occasions that we've used them) my ds looked at me, really looked at me and said "i love you Mummy" - doesn't sound much but really was so noticeable 'cos although I wouldn't have said before that that he wasn't making a connection but suddenly the connection amped by 50% - much more intense eye contact than in many previous months and the I love you bit I hadn't heard for a very long time.

 

I imagine that depending on severity, type of and age of presentation, PANDAS/PITANDS/PANS whatever may well look like autism or aspberger's

[nicklemama]

My DS was diagnosed w/ Aspergers at age 6y9m during an ongoing PANDAS episode (we didn't know it was PANDAS) and just a few weeks before Dr T diagnosed him w/ PANDAS. I'm telling you, he had a LOT of Asperger's behaviors. I almost bought into it. He was NOT Asperger's before Flumist and PANDAS. I read about the glutamate and ASD like behaviors w/ a lot of interest. DS was taking 50mg bid of Lamictal when he was diagnosed Asperger's. The lamictal did nothing to curb any of the Asperger like behaviors. It did dampen his irritibility and anger. Still had the OCD, no change in that. He was also ticcing badly by the time of PANDAS diagnosis. We are currently weaning him from lamictal (its slow) but I don't want to miss anything so I keep reading anything and everything put out there about glutamate.

 

He has lost most of his Aspergers behaviors. He still has some trouble w/ social skills but nothing like before. Abx and IVIG have really turned him around.

[911RN]

Okay, so I find the glutamate thing interesting, but this is about the 10th time in less than two weeks that Ive seen PANDAS grouped together with Autism and PDD. This distrubs me so much. They are very different diseases. Autism and PDD involve dysfunction of the cerebellum, lack of understanding emotions and no language development, vaccine damage. PANDAS involves dysfunction of the basal ganglia... now the basal ganglia has an effect on speech, so there can be problems in that area but THEY ARE NOT THE SAME!! Im sorry but it really royally urks me to see these grouped together and I really think its wrong to do so. You can have PANDAS, you can have Autism and PANDAS, you can have Aspergers and PANDAS. 3 seperate entities. If glutamate is involved in all of them, so be it but dont group them together based on that alone.

 

 

I think one needs to consider that it's the effect that PANDAS has on areas of the brain- basal ganglia, low perfusion in temporal lobe etc that gives all the cross over behaviors indicative for ASD/Asperger's. That's why ASD, Aspergers etc have sets of criteria. I had a 2nd opinion Dev Peds at Chapel Hill- very qualified-educated at prestigious, Ivy league, Columbia University- tell me my DS11 (8 at the time) was "Aspergers- not meeting the criteria." I went back to 1st DP. He had refused to diagnose my son with anything because he didn't fit into any commonly known box-and he said- absolutley not! You either meet the criteria or you do not. Or, why don't we just call everyone a little bit Aspergers's? He was furious. There is so much disagreement in the medical community that it's very frustrating trying to get to an agreement on dx. Kids often need IEP's and school services so parents just take what they can get to qualify for needed services to assist their child. Sad but true! Needless to say- I never went back to 2nd DP. I had ADOS assessment done and he was not on the spectrum at all. Did not meet any of the cut off criteria for any of the 6 indicators. So...couldn't be on the spectrum or Asperger's.

 

I get patients in full blown mania in ED with echolalia which is a common ASD behvavior- BUT that does not put them on the spectrum! So many of these kids are misdiagnosed because they are misdiagnosed! Called it ASD, Aspergers, PDD NOS because PANDAS was not even known or considered by any of the docs. Or, docs say PANDAS is not real etc. I say PDD NOS is not real- a junky, garbage diagnosis that docs give when they are too lazy, too scared or too stupid to investigate what is really wrong with child or try to figure out what went wrong.

 

I hear your frustration...I experience it, too, when I read so many cross over dxs from parents but I know where it comes from....blame the medical community and what these uninformed docs tell parents or what is needed for IEP's to get services. My son is diagnosed bona fide LKS and CAPD. He likely has PANDAS also- none are even qualifying IEP diagnosis! We are in "Other Health Impaired" category which is harder to qualify for than the ASD stuff. You do what you have to do to help your child. Even, if sometimes you don't agree with it!

 

Agreed, it all muddies the water and blurs the windshield at the same time.Not sure what prism to look through most times.

[Johnsmom]

I haven't been on the forum much lately but boy am I glad I read this topic. DS10 was diagnosed PDD-NOS at age 5. Diagnosed PANDAS by Dr K at age 9. The stories I've read here are so similar to ours. Unfortunately we don't know when things went wrong. (history of rheumatic fever on both sides of my family!)

My son has only shown remission of his symptoms on the steroid burst and 12 weeks after hd IVIG. His social issues are what seems to hinder him the most. He is just riddled with anxiety. He continually steps out of circle time when he has to choose somebody to throw the ball to at school. (some kind of greeting game). After 3 years of karate he still cannot pick a partner. I'll never forget sitting in the car with him and he asked me "mom, do you want to know why I have such a hard time with that game at school and why I can't pick a partner at karate?"

My jaw dropped! "yes, I really do"

He told me he cant choose." What if I pick the wrong kid?" What if one of them gets mad at me?"

 

Does this sound crazy or what? It's such a simple task. How could his mind take over like that? I have discussed this with him a few times but he mainly gets upset and doesn't want to talk about it.

 

Has anyone experienced anything like this?

 

Were on our way back to Dr K after doing a few lower dose IVIG's(with a different doc) that only gave us blips of improvement.

 

 

 

Thanks again for all of your stories.