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Posted

I can't post this as I order this journal in paper form. I was about to stop ordering it, when I opened this am's copy to an article entitled "Adolescent w Neuropsychiatric Symptoms Associated w Novel Influenza A (H1N1) Virus Infection.

 

13 year old boy, normal, admited to ER due to altered mental status - confusion, slow responses, aggression. All blood tests normal. They found flu virus (no other signs) using "real time reverse transcriptase-polymerase chain reaction in a nasopharyngeal swab specimen". Said he had encephalopathy associated with influenza. This is suspected as first case in the US - but in Japan, in late 1990's, there was a flu outbreak with hundreds of cases of encephalopathy, almost all in kids. They treated him with risperidone to control delirious behavior, then gave Oseltamivir for flu, he was discharged after 10 days.

 

In the summary, they state that rarely are viral antigens detected in the CNS tissue and isolation of virus from CSF (cerebrospinal fluid), suggesting that neurological manifestations may results from an immunolgic effect rather than invasion of the CNS directly. They suggest (although no studies yet to back up) use of antivirals, such as Oseltamivir if suspected flu, or sudden onset neurological issues during flu season.

 

So after reading this article, I looked again at encephalopathy, and thought this gave a good list of things that a sudden onset neuro issue child should be evaluated for:

 

http://en.wikipedia.org/wiki/Encephalopathy

Posted

There was somebody from AZ here awhile back that suspected PANDAS. I referred them to my pediatrician and It seems that what he had was a post infectious encephalitis, not PANDAS.

Posted

well wouldn't that be PITANDS

 

There was somebody from AZ here awhile back that suspected PANDAS. I referred them to my pediatrician and It seems that what he had was a post infectious encephalitis, not PANDAS.
Posted
well wouldn't that be PITANDS

 

There was somebody from AZ here awhile back that suspected PANDAS. I referred them to my pediatrician and It seems that what he had was a post infectious encephalitis, not PANDAS.

 

I think it would have to be more chronic to be pitands. This was a one time deal. I don't remember a huge amount about it- just remember being happy for them that it was resolved easily. I think they'll probably be back if it crops up again!

Posted

The question is was it a 1 time deal from the flu

 

...or was it low grade undiagnosed PANDAS which became Pitands.

Posted
The question is was it a 1 time deal from the flu

 

...or was it low grade undiagnosed PANDAS which became Pitands.

 

My son was fine until he had the regular flu mis nasal spray. Three days after the nasal mist he started with ticks,ocd, aggressive behavior. I wish I could find other prents who have similar stories.

Posted
The question is was it a 1 time deal from the flu

 

...or was it low grade undiagnosed PANDAS which became Pitands.

 

 

so EAmom - i'm curious for your thoughts - do you think strep is at the root of all, starts the ball rolling and then other infections/exposures can enact the same response b/c of a screwy immune functioning? so, pandas becomes pitands. or could some pandas be not fully diagnosed pitands?

 

i guess it comes down to the chicken or the egg and i don't know if it really matters but it is something my brain runs circles around. for my son, we've discovered some other infections so . . . was his body already overloaded and strep hit, causing an overflow and pandas symptoms? or did he have strep (known infection 2.5 years before symptoms, maybe never kicked it) and wasn't able to properly fight the other infections and then the overflow with symptoms?

 

like i said, i guess it doesn't matter -- either way comes down to riding of these infections and keeping close eye on symptoms of return. i think there's no way to know except going back in time but just something i wonder. as if i don't have enough to think about . . .

Posted

My son was fine until he had the regular flu mis nasal spray. Three days after the nasal mist he started with ticks,ocd, aggressive behavior. I wish I could find other prents who have similar stories.

 

My son went for 3 years with a mistaken diagnosis of bipolar disorder. Then in September he received an ordinary killed-virus flu shot at his annual check-up, after which he came down with a bunch of terrible neurological symptoms, and it became evident that he is actually suffering from a post-infectious neuro-psychiatric autoimmune disease.

 

Dr. K told me he has had a number of patients who suffered PANDAS/PITAND exacerbations triggered by vaccinations -- and that it has become apparent that "killed" as well as "live" vaccines pose a threat to children with these illnesses.

 

Tenacity

Posted (edited)
The question is was it a 1 time deal from the flu

 

...or was it low grade undiagnosed PANDAS which became Pitands.

 

 

so EAmom - i'm curious for your thoughts - do you think strep is at the root of all, starts the ball rolling and then other infections/exposures can enact the same response b/c of a screwy immune functioning? so, pandas becomes pitands. or could some pandas be not fully diagnosed pitands?

 

i guess it comes down to the chicken or the egg and i don't know if it really matters but it is something my brain runs circles around. for my son, we've discovered some other infections so . . . was his body already overloaded and strep hit, causing an overflow and pandas symptoms? or did he have strep (known infection 2.5 years before symptoms, maybe never kicked it) and wasn't able to properly fight the other infections and then the overflow with symptoms?

 

like i said, i guess it doesn't matter -- either way comes down to riding of these infections and keeping close eye on symptoms of return. i think there's no way to know except going back in time but just something i wonder. as if i don't have enough to think about . . .

 

I think for most of these kids, strep is the underlying trigger that starts autoimmune process...and then child starts to react to other illnesses, anything that triggers the immune system. And b/c so many strep infections go undiagnosed/untreated, parents might not even realize that was the original problem.

 

But, it makes sense that there are other illnesses that could cause a PANDAS like response (auto-immune encephalitis)...I just think strep is a the most common one.

Edited by EAMom
Posted

I really wonder how many "bipolar" kids are post-infectious neuropsychiatric autoimmune dz...PANDAS or otherwise.

Posted
I really wonder how many "bipolar" kids are post-infectious neuropsychiatric autoimmune dz...PANDAS or otherwise.

 

That question - that thought - that reality - it simply breaks my heart. This may sound odd coming from a PANDAS/PITAND mom who went into the darkness with my child - but I believe that we are the fortunate. We will never again doubt the truth of who our child is and will fight for her with confidence and I pray that will serve her well for all of her life.

 

I recently told my best friend, that if I ever seem to go nuts, to please insist on abx or antivirals immediately, and to test for every infectious disease she can think of.

 

I am a changed person. I never realized how much faith and hope and determination can be required to survive.

Posted

I so agree, Meg's Mom, with the gist of what you say. But remember, the bacteria and viruses come and go, while the anti-neuronal antibodies continue to do their dirty work. Where does that leave the child, who is psychotic because of an exacerbation of autoimmune disease of the brain? Let's face it, the average doctor says, "Titers are all normal.... There's nothing organically wrong with you... Go home.... See a therapist...." PANDAS and its relatives on the disease spectrum are not infectious, but POST-INFECTIOUS. Sadly, the concept of post-infectious disease seems to be beyond the ken of most medical professionals. Very wrong, and very dangerous....

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