For those with an autism diagnosis first

[Mary M]

I have some concerns about how to determine if a child has PANDAS if he or she has already been identified on the autism spectrum. How have any of you made the differentiation to ensure PANDAS treatment?

Mary

from Michigan

[peglem]

Once the strep was discovered (1st swab at 10 years old), I could predict positive strep just by behaviors (over the top ragey).

[Ozimum]

Looking back now I realise that everything we'd started to see as AS got much worse with colds/flu - anxiety, OCD, drop out moods, and fatigue. We'd already started Biomed treatment for leaky gut when he got sick again. It was our Biomed dr who looked and found strep throat.

[MomWithOCDSon]

My DS had an Aspberger/PDD diagnosis, but it was always secondary to his OCD diagnosis. When standard treatments for the OCD (ERP therapy, SSRIs) failed to make a dent in his OCD, we found PANDAS, got the ASO and AntiDnase-B blood tests (he was asymptomatic for strep and never had a positive culture), found that his titers were exceedingly high, and began antibiotics. The crazy thing was that not only did his OCD recede with antibiotic treatment, but so did his Aspberger/PDD behaviors.

 

I think you'll know. If your child responds to PANDAS treatment, it will set a new bar for behavior.

[nicklemama]

DS was diagnosed Aspergers, age 6y9m, about a week before I called Dr T. I just couldn't wrap my head around the fact that he was Aspergers since he hadn't always had those symptoms and it all started after the FluMist.

 

Aspergerish behavior went away w/ abx.

Edited May 26, 2011 by nicklemama

[Stephanie2]

In my younger child, he would just have your strictly autistic features: lack of self-initiated communication or social interactions, etc. We started treating the ASD (biomed) and he improved tremendously. Then a couple months later - BAM - sudden onset rages and strange eye movements. Took him to Neuro who asked if he had strep recently. the rest is history.

 

In my older son, he always had subtle autism features: strange play habits, strange social habits, very hyper, etc. But then sudden onset emotional lability, separation anxiety, ragey, tics.

 

I find that the two disorders are very distinct in my kids. You really can't miss it. I think a lot of people confuse the "rigidity" of OCD for autism. No where in the DSM for autism do you see obessessive behaviors. That is OCD and most likely pandas. I think lots of kids with pandas are going undiagnosed in the autism community unless they have a good DAN doc.

[NancyD]

But the DSM for ASD does say restricted thoughts and repetitive behaviora with parts of objects and/or body parts and I think this is where so many clinicians (even good ones) confuse those symptoms with OCD. In fact, Some theorize that the restricted thoughts and repetitive behaviors with parts of objects and/or body parts eventually morph into OCD when the child is older.

 

My DD clearly met the DSM criteria very early on (under 1 year) but had no signs of PANDAS until she was 2 and that was overnight (within one week of having impetigo).

 

I do believe my DD's immune system was compromised in utero -- she had GI problems and allergies from birth and she had difficulty with social, emotional, and communication skills.

 

And since we were both diagnosed with Lyme (and probably Bartonella), I believe it was congenital and induced my DD's ASD symptoms -- and subsequently left her vulnerable to PANDAS.

 

I do believe many children on the autism spectrum have undiagnosed PANDAS/PITANDS and/or Lyme and other co-infections. And I believe these underlying infections are causing the ASD symptoms.

 

INo where in the DSM for autism do you see obessessive behaviors. That is OCD and most likely pandas. I think lots of kids with pandas are going undiagnosed in the autism community unless they have a good DAN doc.

[smartyjones]

I do believe many children on the autism spectrum have undiagnosed PANDAS/PITANDS and/or Lyme and other co-infections. And I believe these underlying infections are causing the ASD symptoms.

 

 

i know not the main question in this thread, but. . . how about those that are just outside of the umbrella of ASD -- how many of those also have underlying infections just not creating symptoms 'troublesome' enough to warrant a diagnosis -- or having ADHD or behavioral issues.

 

ds wouldn't have qualified for asperger diagnosis but had 'asperger-like' symptoms. if not for a very savvy behavioral therapist who thought behaviors sounded like OCD, and trusted my statements of sudden change, (others blew it off as i was unaware until it reached breaking point) --although myself and all other professionals consulted did not pick up on this -- and suggested checking titers -- we would have tried to treat ds behaviorally for years.

[NancyD]

The thread was discussing differentiating PANDAS from ASD but I also believe these underlying infections are causing many other neuropsychiatric conditions (e.g., ADHD, BP, ODD, OCD, TD, SID, etc.). Chances are good if you uncover and treat the underlying infections the neuropsychiatric symptoms will disappear.

 

I do believe many children on the autism spectrum have undiagnosed PANDAS/PITANDS and/or Lyme and other co-infections. And I believe these underlying infections are causing the ASD symptoms.

 

 

i know not the main question in this thread, but. . . how about those that are just outside of the umbrella of ASD -- how many of those also have underlying infections just not creating symptoms 'troublesome' enough to warrant a diagnosis -- or having ADHD or behavioral issues.

 

ds wouldn't have qualified for asperger diagnosis but had 'asperger-like' symptoms. if not for a very savvy behavioral therapist who thought behaviors sounded like OCD, and trusted my statements of sudden change, (others blew it off as i was unaware until it reached breaking point) --although myself and all other professionals consulted did not pick up on this -- and suggested checking titers -- we would have tried to treat ds behaviorally for years.

[Kiera]

My ds 8 falls in the category of multiple diagnosis (sensory, anxiety, speech delay, ADD, GI issues, some ODD) all prior to PANDAS, yet given all these difficult behaviors, the PANDAS symptoms stuck out like a sore thumb as being obviously something serious going on, and with treatment with steroids and antibiotics, he returned to his baseline before PANDAS, with all his old conditions as before! The obvious PANDAS symptoms were : sensory issues became extremely exaggerated with new sensitivities like smells and tastes that were never there before, OCD appeared out of the blue concerning contamination fears, OCD episodes looked like psychotic episodes not typical OCD, rages - oh the rages!! Slamming doors, throwing things, yelling, Meltdowns worse than usual - hiding under the bed, in closets crying uncontrollably and a persistant throat clearing, sometimes eye blinking tic appeared! All this happened simultaenously, following a strep infection, so there was no doubt for me this was PANDAS and not just a ramp up in his usual disorders. But the big question - is PANDAS just another disorder he happens to have unrelated to his initial diagnosis - highly unlikely, OR is PANDAS another presentation of something grossly wrong in our envoirnment that's causing an explosion in autism, allergies, autoimmune disorders, asthma, ADHD etc. The latter I'm sure and only time will tell!