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TracyRee

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I've been over in the pandas section fro quite some time, we've known about DS's pandas since he was 3. He's almost 6 now and was diagnosed with Asperger's this March. We've finally wrapped our heads around it and are starting him on a GFDF diet to see if some of his symptoms lessen.

 

We haven't talked to him about his Asperger's, just seems way to early/young.

 

He's been asking why he has to be gfcf so I've told him things like to help his eczema and see if it helps him feel better.

 

I hate making him be on a special diet. He's ok with it when it's just us, but he gets upset when he has to have special foods in a group.

 

Not sure what I'm saying here besides hello, here we are and any btdt advice would be great. DS is starting Kindergarten ina few weeks..shuld be interesting.

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The most successful program I've found for helping with social/emotional development in autism and aspergers is Relationship Development Intervention. You can read more here:

http://www.rdiconnect.com/

 

This is the only program I know of that works on remediating developmental deficits, instead of just getting the child to "act normal."

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Hi Tracy. I have talked to you before. My son is 8 and stared having PANDAS symptoms at one year. A year ago he has been diagnosed with Aspergers and ADHD and OCD. He has had lots of motor delays. He is quite the mix. We did the GF CF diet for 6 months but saw no change. It was hard to do with school too. He was also 6 then. At 8 he is seeing how he is different and understanding PANDAS and Aspergers. I feel time helps them mature, and beween six and 8 are hard years. I had to train myself to deal with him in a calmer way. He still is obstinate and can be difficult but with the help of some meds and psychologists he is less impulsive and angry then last year at this time.

 

Michele

 

The most successful program I've found for helping with social/emotional development in autism and aspergers is Relationship Development Intervention. You can read more here:

http://www.rdiconnect.com/

 

This is the only program I know of that works on remediating developmental deficits, instead of just getting the child to "act normal."

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Hi all,

 

I am a PANDAS/Lyme mom as well. However, since age 3.5 I have always felt that dd7 has aspergers. No one will take me seriously. We had dd tested for the whole spectrum as soon as we were faced w her personality change but were told she didn't meet the diagnosis criteria. I see that you two got the diagnosis some time after the PANDAS dx. How should I go about pursuing this? I made an appt with the ped but she is adamant that dd is not aspergers or autistic. We are in Seattle. I thought that our children's hospital was less than cordial to us.

 

The thought of going to yet another doctor is enough to knock me flat on my face. I really don't feel I have the energy for this.

 

The child is something in addition to PANDAS because she never really gets better.

 

Sorry to vent.

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Hi all,

 

I am a PANDAS/Lyme mom as well. However, since age 3.5 I have always felt that dd7 has aspergers. No one will take me seriously. We had dd tested for the whole spectrum as soon as we were faced w her personality change but were told she didn't meet the diagnosis criteria. I see that you two got the diagnosis some time after the PANDAS dx. How should I go about pursuing this? I made an appt with the ped but she is adamant that dd is not aspergers or autistic. We are in Seattle. I thought that our children's hospital was less than cordial to us.

 

The thought of going to yet another doctor is enough to knock me flat on my face. I really don't feel I have the energy for this.

 

The child is something in addition to PANDAS because she never really gets better.

 

Sorry to vent.

 

I'm wondering, is it that you want an Asperger or autism diagnosis, necessarily, or you're looking for some answer as to what may be impacting your child, and therefore a course of treatment that may help her navigate her world more closely?

 

Lots of kids who "don't fit" necessarily an Asperger or autism dx wind up with a "PDD-NOS" diagnosis (Pervasive Development Disorder - Not Otherwise Specified). Frankly, I'm not clear on what good such as dx does for anyone, expect perhaps qualify them for services in the educational setting that they might not otherwise get.

 

Have you tried or considered having some testing done . . . the sort of IQ testing that might be done for getting your child an IEP at school? I know that, even when a child scores "average" or higher on that testing, if there is a significant discrepancy between the verbal and spacial skills sets and scores, they consider that indicative of some "processing differences" that may or may not fall into the PDD-NOS realm, and it can qualify the child for social and psychological services in the school setting.

 

My DS has PANDAS, also. In the depths of it, he was diagnosed as having both Asperger and PDD-NOS by two different doctors. He's always had some "quirky" characteristics, even before the PANDAS came into full bloom, but no one had ever applied those labels or dx to him before. It was as though the PANDAS exacerbated and exaggerated those characteristics, though, and then there were even points in time when he seemed very much in his own world . . . pretty autistic-like.

 

Once he began to heal from the PANDAS, though, most of those characteristics faded significantly; now, for the most part, they've disappeared. The two doctors who'd dx-ed him with PDD-NOS and Asperger 2 years ago have retracted those dx's. He's still quirky. Still sometimes gets very focused on things of interest, to the exclusion of most everything else. Occasionally will talk a blue streak and miss your facial and/or body language clues that you've heard enough 'til you get in his face and tell him "enough already." But every professional he sees, including the psych and social worker at school, tell us he's not "enough" of all these quirky things to meet the dx anymore.

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My son is also "quirky" but has been tested and does not fit Asperger's Dx or Autism dx. I had one doc (Developmental Peds) at UNC that wanted to label him "asperger's, not fitting the criteria." When I took him to another Dev peds...he said this was BS. You either fit the criteria or you do not. Don't force a square peg into a round hole. THAT is the reason for the criteria! He said, if not, why don't we label everyone a little asperger's, a little Autistic, a little OCD etc.

 

I believe the most important thing (besides a label) is to make sure your child is getting the resources they need for the developmental issues and IEP accommodations (however, I realize, sometimes, a qualifying diagnosis is NEEDED for that).

 

I would suggest repeat testing by Neuropsych. My son has had extensive psychoeducational testing at age 6,8, 9, 10 and 11. We learn something at every testing that helps us going forward. Some of it has been speech related as well as academic related.

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