How many here have Autism in addition to PANDAS?

[peglem]

www.chicagonow.com/blogs/fighti...

I just get a "page not found" notice there. Care to elaborate?

Edited February 2, 2011 by peglem

[Johnsmom]

http://www.stopcallingitautism.com/

 

 

Sorry. Trying to this from my iPhone. Too exhausted to get up and turn on the laptop. Can someone define autism for me.

 

Thanks

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[jackieann]

Daughter now 16 diagnosed with Asperger's at age 13.

[peglem]

http://www.stopcallingitautism.com/

 

 

Sorry. Trying to this from my iPhone. Too exhausted to get up and turn on the laptop. Can someone define autism for me.

 

Thanks

Has this changed yet? Weren't they updating the DSM?

Diagnostic Criteria for 299.00 Autistic Disorder

======================================================================

 

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]

 

(I) A total of six (or more) items from (A), (, and ©, with at least two from (A), and one each from ( and ©

 

(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

2. failure to develop peer relationships appropriate to developmental level

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

( qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

© restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

2. apparently inflexible adherence to specific, nonfunctional routines or rituals

3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)

4. persistent preoccupation with parts of objects

 

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

 

(A) social interaction

( language as used in social communication

© symbolic or imaginative play

 

(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

 

----------------------------------------------------------------------

That's the real criteria, but there seem to be a whole host of other things that get lumped in by practitioners as "common in autism".

[tpotter]

My son has Asperger's, but I firmly believe that it was PANDAS along. Now that he's 18, though, there are so many learned behaviors. But, interestingly, I believe that his social skills have improved from about 7 years - about 12 - 14 years old in the past year. He got PEX in September '09, and he started getting IVIG every 8 weeks Nov. '10 and then again 2 weeks ago. So, I do believe tx is helping. BUT...there are still so many learned behaviors.

[momcap]

My DS7 has had many PDD-like symptoms. It was very severe around age 4-5, and I'm sure he could have been diagnosed Aspergers then if we had pursued that diagnosis. Now it's less severe and more intermittent, and there's not enough symptoms there for a diagnosis.

[Stephanie2]

My 6yo was placed "near" the spectrum (one point away on the CARS eval) during a non-pandas time. I think with my 6yo it is ALL related to infections. when his infections are managed, he is 100% normal. The problem with pandas is that when we treat it with antibiotics we create the following in the gut: clostridia, yeast, klebsiella and the list goes on. So, thus far, treating pandas at times is almost worse than not treating pandas in terms of autism symptoms. Still trying to strike the balance for this poor kid. Do I think pandas caused his autism symptoms? a little, but I think clostridia makes him look like he is further on the spectrum than anything else. Oh, and he did have a reaction to MMR (high fever, rash) and it was about 2 months later that he had his first pandas episode, could be coincidence.

 

My 3yo I think had multiple issues going on. He was more severe in terms of autism symptoms (reduced eye contact, lost all babbling at 4 months, still trying to recover speech, no initiation of social interactions and not really any response if we initiate interaction - just sit there and smile back - at least we had THAT). I think most of his problem is also infections, but he also has the following that pose a problem for him: mitochondrial dysfunction, MTHFR gene mutation, chiari malformation, hyptonia (prob related to mito), etc. He did indeed have a reaction to DTaP (which was the only one he got that day) which is about the time he lost his speech and went backwards in physical ability (could not hold up his head - but did respond well to PT at that time). Do I think PANDAS caused his autism symptoms? No, I think he appeared autistic before his first pandas exacerbation. Do I think kids with underlying biomedical problems are more "at risk" for pandas? yes.

 

The DAN protocol has done a lot for these boys. They have much more functioning than they did. But thus far, managing pandas has proved to be the hardest thing, and the side effects from the antibiotics are quite debilitating.

[NancyD]

DSM 5 won't be published until May 2013. By then it will change again!

 

Has this changed yet? Weren't they updating the DSM?

[SarahJane]

No autism dx here. When ds was little, we went thru the rounds of evaluations because the drs thought they saw something ("funny" how they can see everything but PANDAS). He does not fit the criteria, and any symptoms he does have come & go. During an exacerbation, he can seem very autistic, but he's not autistic.

[MomWithOCDSon]

I'd just like to add that autism is just a set of symptoms.

Yes, Peg, thanks! A nice, convenient label to stick on some of our kids to absolve healthcare providers from digging deeper for answers and functional help.

 

My DS has had some Aspberger-like traits since preschool -- before any OCD showed up and well before PANDAS diagnosis. Never diagnosed as such, however.

 

Then IEP testing via the school last winter indicated some "processing differences" on the autism spectrum; again, no one made the actual diagnosis. He definitely learns differently from some of his classmates, but once he learns, he's off and running. Slower to grasp some things, faster to grasp others, and a memory like an elephant.

 

Funnily enough (or not ), his ERP therapist called me last week because the insurance company had sent him a form to fill out regarding a treatment plan. Over the phone, he's going over the questions on the form and he gets to the diagnosis question and he precedes to tell me that my DS has a diagnosis of OCD, GAD and PDD-NOS!!! I am floored, as we had talked about the fact that DS can display some of all of these tendencies, but that they are not always present, and every treatment payment receipt we've ever received from this same therapist had only a single code on it: the one for OCD. So, of course, when my company changed insurance carriers, on the application, I only disclosed whatever codes had been documented thus far, and these new diagnositic codes were not only inappropriate, but likely to cause us problems with coverage!

 

I'm with that family with the web site: STOP CALLING IT AUTISM!

[Kayanne]

We never had an autism diagnosis because we were put right onto the PANDAS trail by our pediatrician. However, at my daughter's worst, she looked severely autistic. Her teacher told she looked just like it. It was very scary to see a perfectly normal, independent 6yr old decline in a matter of weeks.

 

No doctor ever brought the autistic term up...it's ridiculous to say that a child "gets" autism over a couple of weeks. Although I am worried for other children that have this happen earlier in their development.

[Johnsmom]

Like us. We got hit at a young age. Quite possibly 1 yr old.

PDD-NOS was the diagnosis @ 5. At age 9, it's PANDAS.

[Stephanie2]

Like I always say to my husband, "these doctors are doing such a fine job with the children of today" (sarcasm)

 

It's almost like the landscape is changing faster than the pediatricians can keep up (or want to keep up) but then when us proactive moms try to take the bull by the horns we are scorned upon. They are just so incompetent and I'm not really sure who's fault that is. I don't necessarily blame it on them, they are doing what they were trained to do. But can't they see through that? Are they, themselves, frowned upon from going against the grain?

 

I can tell our ped is dying to "go against the grain". She would talk out of both sides of her mouth when it came to vaccines, but when push came to shove and she saw my youngest rapidly declining, she literally told me under her breath that I should wait a little while before I do more vaccines. I was shocked that she would admit to such a possibility b/c she always seems so concerned about her image.

[T_Mom]

Not here, ALTHOUGH, my son displayed autistic behaviors during his really horrible acute illness, with sudden refusal to make eye contact, couldn't do anything but watch t.v., echolalia, wouldn't respond to questions, severe hyperactivity where he could only run from room to room- couldn't walk or stand still. It cleared up quickly too.

 

 

Neither of my daughters have autism -- BUT, like Phasmid's son, my older d appeared as if she had autism during her worst exacerbation. She had age regression, stereotyped movements, no eye contact, eyes closed, held painful positions balled up on the floor, drooling/spitting, could do nothing but "watch" tv, had to be carried, she did not speak for 3+ weeks, etc.

 

If someone had assessed her at the time of her exacerbation she would have qualified as severely autistic. In her case she came back to us via steroids and antibiotics.

Edited February 3, 2011 by T.Mom