How many here also have an Autism diagnosis?

[PhillyPA]

Peglem, you are right on. I agree with you 100%. When the brain is sick, it only has so many ways to show that it is sick. For example, many people who have had traumatic brain injuries, like soldiers in war who have had have their heads blown off, have autistic symptoms. Kids and adults who get herpes encephalitis or any other type of encephalitis, have autistic symptoms. You can be an adult, get encephalitis, lose your language and be unable to sleep, etc. and it will look like autism. When I refer to an autism I am referring to a more layman's and professional definition- which is usually in infancy or toddlerhood.

 

I do believe that autistic symptoms in children are out of control-and there is a reason behind it.

 

When my mother was a nurse at Bryn Mawr Hospital in Pennsylvania( this was fifty years ago) she was on rounds with a doctor. They went into a room and he said, "This is a child with autism. Take a good look. You will never see it again. It is extremely rare."

[jjl]

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

 

 

Vicki,

 

I certainly do not want to make this a debate about terminology, but since you asked, I will give you my opinion. I have two boys with autism and very likely PANDAS. IMO, the best way to describe things to get proper medical attention or to a frined or family member is to reference the symptoms and possible sources (ie. infection/immune issues). Why, because parents and doctors know how to treat symptoms/conditions, but not labels. There is noone on this planet that I am aware of that can treat "autism". Like many other parents, I have spent about 10 years going to dozens of doctors and researchers across the country and I belong to dozens of forums relating to autism. I have yet to find anyone that treats "autism". What they do is look at the child, talk to the parents, and acquire lab tests. All three of these things are done in an effort to understand the symptoms/core issues. Children that are labeled with autism normally have a constellation of symptoms, and I do not know any two children that have the exact same symptoms. Many have similar symptoms, but like PANDAS, they do not have identical symptoms and of course severity levels are also different. The value I see in this forum is all the parents describing the symptoms, core issues, and treatments. Afterall, not everyone on this forum is actually dealing with PANDAS; some don't have the "S" at the end because they are dealing with an infection associated with something other than Strep. So, IMO the labels aren't as important as the symptoms/core issues. Just a dad, John L

[tantrums]

Reading this as I'm sitting at my desk at work - at the Division of Developmental Disabilities I have had more than one doctor request I do some "sould searching" and rethink my statements about my son. My statement has been this... Had I NOT known this child the first 6 years of his life - yes I would say he has Aspergers. However, since I do the work I do I KNOW he did not have Aspergers before getting H1N1 and then PANDAS/TS and I KNOW that kids do not suddenly develop Aspergers at age 6.

 

That said - I DID soul search. I questioned. Of course I did And I questioned more people here at work than you can imagine. I talked to our Division psychologist, our nurses, our Developmental Specialists and our intake workers. NO ONE has had anyone come through this Division who developed ASD at age 6.

 

My son is PRESENTING with Aspergers at this point. I don't doubt that. I also know the system and am not above using that DX to get services he needs at this point. Funny because I admittedly rolled my eyes many a time going to visit a family and seeing a child I did not believe had ASD at all - I still say ASD is over diagnosed in its true form and there should be clearer diagnostic critera. I also believe services should be expanded to other DX and disorders of course

[nicklemama]

Tantrums- My son is also presenting w/ Aspergers. Funny how it just suddenly popped up at age 6 for him, as well. I see you've gotten your CamKinase back and it looks high. What were your son's titers? My son's have come back completely normal. We are still waiting on the test kit from Dr Cunningham. Its been several weeks now.

 

Cindy

[tantrums]

Sadly, we didn't get titers done right away. By the time we did them, he had 6 months of ABX down. But then, they were still over 200 so I'd LOVE to know what they were during the initial presentation!

 

Of course, since hearing a psychiatrist insist he has Aspergers and our ped say he may be right... I've been in a frantic state of mind to try and stop it from happening! I think my main fear is that he is perceived as Aspergers. I mean, if he had Aspergers fine! Really, I'd deal with it and I'm certainly not prejudiced against ASD in any way But I just know in my heart it's not right. And if a kid can "develop" Aspergers within one year of an illness, what can happen in the next year? Or five? Terrifying really!

[Stephanie2]

Any mainstream organization will tell you that autism only sets in before the age of 2, however, in my personal experience I have seen more of my son's friends develop it around the ages of 4-5 than anything else. You can ask any DAN doctor and they will tell you they see it all the time. Mainstream docs/psychiatrists will deny this til the cows come home b/c they do not believe the mother's observation that "no, he did NOT have subtle signs of autism that I missed before the age of 5". they think we had our heads in the clouds and suddenly sobered up when the kid went to kindergarten...

 

If I sound angry, I am b/c my SIL is "catching up" on all of my nephew's vaccines now that he is 2.5. She was "erroneously" told by her ped that he is "out of the woods" and even though all the other boys in the family present with autistic features, it will NOT happen to him!

Sadly, we didn't get titers done right away. By the time we did them, he had 6 months of ABX down. But then, they were still over 200 so I'd LOVE to know what they were during the initial presentation!

 

Of course, since hearing a psychiatrist insist he has Aspergers and our ped say he may be right... I've been in a frantic state of mind to try and stop it from happening! I think my main fear is that he is perceived as Aspergers. I mean, if he had Aspergers fine! Really, I'd deal with it and I'm certainly not prejudiced against ASD in any way But I just know in my heart it's not right. And if a kid can "develop" Aspergers within one year of an illness, what can happen in the next year? Or five? Terrifying really!

[Johnsmom]

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

 

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

Oh, just call it PANDAS! Or, autistic symptoms works for me too. Heck, its your kid, call it whatever you want! My point was really that all "autism dx's" are just neurological symptoms, and the label is not diagnostic. I tried to avoid my big rant about the implications (medically and educationally) of autism as a "diagnostic" label. I don't want to get into what is politically correct (I don't even begin to know)- I just think it is a bad idea (based on my experience) to refer to autism as a diagnosis. I really think this is true of most psychiatric conditions. It angers me when patients are sent to psychiatrists simply because other physicians are not able to figure out what's really wrong with the patient. I think the only way to turn this practice around is for people to change the way they think about and talk about autism and other labels for neurological symptoms.

 

 

I agree! Just call it PANDAS!!!!!!!!!!!!!!!!!!!

[PhillyPA]

It is not at all common for children in the age group of 4 and 5 to get sudden onset autism. Even less common in 5 year olds. I don't want newcomers to get only one person's experience and impressions. I have spoken to a DAN doctor. It is virtually unheard of. Stephanie I respect your position and your research but it is different from mine.

 

If your child gets sudden on-set regressive autism at age 5, it is probably PANDAS.