How many of you have children on or close to the autistic spectrum?

[Stephanie2]

The reason I am asking this is b/c my son tested at a 29 on the CARS evaluation (an autism scale, where 30 and above is considered "on the spectrum"). We have had several psychs/therapists tell us that our son has a "different affect" like an asperger or pdd-nos child, but that he is not quite on the spectrum. I would say that I agree with them. So we have been with a DAN doctor since March who has done many interventions and with the exception of pandas, I feel that my son is very far from the spectrum now. But here is what I am wondering...

 

We have done so many supplements/diets that all really seemed to show an improvement, but as we were adding these things, my son was in and out of pandas episodes (looking back). So now I am left to wonder which of these interventions really worked and if maybe 90% of his issues all along have been pandas related. So if he didn't have pandas, would he not have ever tested close to the spectrum?

 

I wonder this all the time, b/c I am wondering if I can take him off the gluten/casein/soy free diet, but the other day we tested soy and he seemed to become immediately hyper and started flapping his hands. So maybe his issues were really a conglomerate of things...? I have to say that these days, when he is pandas free, he appears to be 100% normal.

 

Wondering if anyone has any insight...

 

Stephanie

[Kayanne]

All of my children seem to be developing normally without any autism flags...I have a D8, D6 (PANDAS), S4, and S2. They all walked early, talked early, and seem to do very well in school. I have a 15 yr old nephew with PDD, so our family has been aware of autism for about 10 years.

 

When our DD6's PANDAS started this spring she seemed ADD at first...but it just didn't explain how it came out of the blue. Her PANDAS seemed to progress and by the time we took her to Dr. Latimer, she was so withdrawn, non-verbal, held her hands in fists, and startled at the softest voice...she LOOKED autistic.

 

Even her kindergarden teacher agreed that she was very afraid that she was slipping into autism. However, my Husband's Kyioshi (Karate Teacher) works with autistic children, and she knew my daughter from coming into the Dojo for lessons, and she assured us that autism just doesn't happen out of blue at 6 yrs old...it happens earlier.

 

I am really thankful that her episode happened when it did...at the end of a very successful kindergarden year...well her last quarter was not because they couldn't evaluate her at all because she wouldn't speak, she could still read, but they didn't know if there was any comprehension because she wouldn't/couldn't verbalize anything. She used to write pages and pages of stories along with illustrations...all that stopped

 

She now tells me that she had a hard time speaking or thought that she wasn't allowed to because she felt like something was in her throat...a silence tic maybe?...or a compulsion?

 

She was very, very emotional...toward the end it was more ragey...she refused to eat...I was holding her down, pinching her cheeks, and forcing her to eat.

 

So, what do you think drs. would say about her if she was 15 mos or 2ys old, and all her verbal skills stopped, she stopped socializing, and she had a real distant look about her? I think autism would have been explored for her.

 

Hindsight being 20/20 around 3 yrs old, I do think she either reacted to strep in the house or had a reaction to a vaccine, but then it was more very rigid routines, and insisting that her bed covers had just the right wrinkle, sooo fussy about clothes, some crying fits too. But I do think each episode is different even with the same child....who knows maybe your son's autism is more PANDAS symptoms...you are lucky to have an accessible DAN dr to help you sort it all out though!

[peglem]

So, what do you think drs. would say about her if she was 15 mos or 2ys old, and all her verbal skills stopped, she stopped socializing, and she had a real distant look about her? I think autism would have been explored for her.

I think autism would have been her "diagnosis" and they would have looked no further for explanations.

I do think my daughter's autism is caused by PANDAS, and medical neglect. Amazing how doctors will dismiss everything that happens to an autistic child as just part of autism. I'm exaggerating a bit, but there were times when I was sure if her her leg were chopped off and spewing arterial blood they would tell me that's common in autism! I don't think all autism is caused by PANDAS, but some is. And the crazy thing is....they've got no business "diagnosing" autism anyway- its not a diagnosis, just a group of symptoms that, when they happen together, are labeled autism. It seems like if doctors understood that- then they'd be asking about what causes those symptoms instead of dismissing them as somehow normal for "these kids."

 

Okay, done with my rant, for now. As you can imagine, I feel pretty passionate about this, so can't promise it won't happen again!

[melanie]

So, what do you think drs. would say about her if she was 15 mos or 2ys old, and all her verbal skills stopped, she stopped socializing, and she had a real distant look about her? I think autism would have been explored for her.

I think autism would have been her "diagnosis" and they would have looked no further for explanations.

I do think my daughter's autism is caused by PANDAS, and medical neglect. Amazing how doctors will dismiss everything that happens to an autistic child as just part of autism. I'm exaggerating a bit, but there were times when I was sure if her her leg were chopped off and spewing arterial blood they would tell me that's common in autism! I don't think all autism is caused by PANDAS, but some is. And the crazy thing is....they've got no business "diagnosing" autism anyway- its not a diagnosis, just a group of symptoms that, when they happen together, are labeled autism. It seems like if doctors understood that- then they'd be asking about what causes those symptoms instead of dismissing them as somehow normal for "these kids."

 

Okay, done with my rant, for now. As you can imagine, I feel pretty passionate about this, so can't promise it won't happen again!

 

Hi Danny 15 has ASD sometimes a md will call it aspergers sometimes PDD nos some drs call it spetrum disorder and some call it high functioning autism.I agree whith pglem He had something that was made worse or different with pandas. If I knew then what I know now who knows it could be called something else.

 

melanie

[bubbasmom]

My son is 12. He's always had 'one of those personalities' that people have found the need to analyze. By that I mean did enough quirky things that anyone that has gotten close to him starts saying 'hmmm!' So I have a niece that was diagnosed with Aspbergers about 6 years ago in 4th or 5th grade finally but had been being tested for years for those quirky things. Now I think she truely has it. But the more I studied that, my son really came to mind and I've told people close to me that I really think my son could have aspbergers. Now one thing that goes against some people's theory on Aspbergers is that my son's IQ is like 130. But he has always had the social awkwardness, extreme shyness, talks very very low and will not repeat himself if you don't hear him, has only some OCD, and has a thing about 'his stuff'. If he has a toy in his hand and you ask if you could see it he'd say no ( in his mind you might break it, take it, use it up, whatever ) now if he wants to see something someone else has he thinks that's fine. And he's always 'picked' on people, in an awkward kind of mean way.

This is only the second episode of PANDAS that we've 'recognized', but we've had that 'AH HA' moment realizing that PANDAS has gone on much longer than we realized. So most of our Aspbergers thoughts have turned to PANDAS thoughts.

WHO KNOWS

 

The reason I am asking this is b/c my son tested at a 29 on the CARS evaluation (an autism scale, where 30 and above is considered "on the spectrum"). We have had several psychs/therapists tell us that our son has a "different affect" like an asperger or pdd-nos child, but that he is not quite on the spectrum. I would say that I agree with them. So we have been with a DAN doctor since March who has done many interventions and with the exception of pandas, I feel that my son is very far from the spectrum now. But here is what I am wondering...

 

We have done so many supplements/diets that all really seemed to show an improvement, but as we were adding these things, my son was in and out of pandas episodes (looking back). So now I am left to wonder which of these interventions really worked and if maybe 90% of his issues all along have been pandas related. So if he didn't have pandas, would he not have ever tested close to the spectrum?

 

I wonder this all the time, b/c I am wondering if I can take him off the gluten/casein/soy free diet, but the other day we tested soy and he seemed to become immediately hyper and started flapping his hands. So maybe his issues were really a conglomerate of things...? I have to say that these days, when he is pandas free, he appears to be 100% normal.

 

Wondering if anyone has any insight...

 

Stephanie

[thereishope]

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Edited October 18, 2016 by vickie

[ajcire]

Hmm.. My ds is not on the spectrum but yes his quirks used to really concern me. He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it.

 

His teachers have said he presents just fine with his friends at school and that he doesn't stand out as the odd kid despite being a bit quirky.

[smartyjones]

so interesting Stephanie2! here's my story and my take on the scene.

 

we went to a behavioral therapist who diagnosed pandas. we saw her 3 times. she was watching him and ticking off the "diagnosis" and where he seemed to fit and where he didn't. she couldn't peg him with anything b/c he'd show some characteristic and then disprove it. i did a pdd questionaire rating it at his worst - he came out with something like 26 with a 50 being the low end of mild pdd.

 

he had full blown pandas(no tics) at age 4 and 5 months. he had strep at 22 months and i now wonder any difficult behaviors we saw between those times may have been pandas related. of course, they're also easily explainable as normal development also - that's what we thought at the time.

 

he has always had some positive characteristics of the spectrum - since very young(6mos) he's had an abnormally long and intense attention span - not age appropriate. never to the point that we can't pull him away, just what you'd marvel at being a great attention span. he has a fabulous "puzzle-mind" - always had great spatial visualization skills. he can work puzzles, legos, follow diagrams that you wouldn't think appropriate for his age. he learned to read early and at 5 is a fluent reader. his teacher says how she enjoys working math things with him b/c he just "gets" it - if flows and he doesn't struggle where most his age have to think it out. we've always seen these as strengths b/c they don't interfer with other functioning.

 

on the negative side, he took longer to get into a social groove - not until age 4 and 2nd year in pre-school that he really identified with his peers - always more identified with his older brother and his peers or preferred to be on his own. seemed to have easy sensory overload - places like the circus/sports/crowded events, he'd just seem to zone out and take it all in rather than actively being there - not having to leave, but not seeming to enjoy it.

 

i think he probably resides just somewhere outside the umbrella of autism. luckily for us, in a functioning way that we get the positives and minimal negatives. but just why is that? i think it is that autism is this collection of symptoms caused by various issues and for whatever reason the body reacts in one way or another.

 

as the autism umbrella increases, it stands to reason that those just outside it do also and then we have an even larger population with maybe an easy propensity for external/internal factors - like strep- to push them under that umbrella. it's interesting to think that in our kids young adult working life, they will (and do now) interact with many "autistic" people. i've mentioned before the fabulous book The Horse Boy. the author/father has some great ideas - one main one being that in our culture, we tend to marginalize those that are different and there's going to have to be a cultural shift to embracing them b/c in our kids future - it really won't be so "different" b/c it encompasses so many people! this guy has worked with many indigenous people from other cultures and talks about how those that are revered in other cultures such as medicine men, etc are probably those that we see as "special needs" here.

[Kayanne]

as the autism umbrella increases

 

Our daughter's CBT told my husband that when the new diagnostic manual comes out, they are pulling aspergers from the autism spectrum, and making it separate...I wasn't there so this is second hand info.

 

I bet the school districts would benefit from that...if it isn't considered autistic, then would they be required to provide the social therapies...asperbergers is easy to dismiss/minimize because usually the child's performance in school isn't suffering...

[ajcire]

[

 

he has always had some positive characteristics of the spectrum - since very young(6mos) he's had an abnormally long and intense attention span - not age appropriate. never to the point that we can't pull him away, just what you'd marvel at being a great attention span. he has a fabulous "puzzle-mind" - always had great spatial visualization skills. he can work puzzles, legos, follow diagrams that you wouldn't think appropriate for his age. he learned to read early and at 5 is a fluent reader. his teacher says how she enjoys working math things with him b/c he just "gets" it - if flows and he doesn't struggle where most his age have to think it out. we've always seen these as strengths b/c they don't interfer with other functioning.

 

 

 

Smarty Jones, that paragraph fully describes my ds. He never was into typical boy play.. much happier to do worksheets and puzzles. He was a fluent reader by 4..... but learned at 3. He is having trouble having to show all his work in math because he just gets it. I too look at it as his strengths. He too struggled socially... he just didn't like the other kids form of play. A psychologist told me that who is to say that my son's form of play is wrong.. if he enjoys workbooks and puzzles than who is to say he is the one not playing right. He too is great with legos but he just now is willing to create is own stuff... prior to now he wanted it exactly like the diagram.

[EAMom]

Hmm.. My ds is not on the spectrum but yes his quirks used to really concern me. He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it.

 

His teachers have said he presents just fine with his friends at school and that he doesn't stand out as the odd kid despite being a bit quirky.

 

My dd doesn't always make eye contact b/c (she says) it's too intense for her. I think this is more linked to some social anxiety, shyness, sensitivity....esp. around certain adults.

 

Does anyone know the reason autistic kids don't make eye contact?

 

We did have our dd evaluated by a pyschologist (mainly for handwriting/learning issues) and she said she was NOT on the austistic spectrum (we weren't worried about that but they did test for it). She does have social anxiety (which PANDAS adds to, although she might have a bit as her "normal self" as well).

 

BTW...erica and smartyjones....from what you describe, your kids just sound gifted to me, not autistic! http://giftededucation.suite101.com/articl...ice_exceptional

[bubbasmom]

You have just described my son to a tee!

 

Hmm.. My ds is not on the spectrum but yes his quirks used to really concern me. He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it.

 

His teachers have said he presents just fine with his friends at school and that he doesn't stand out as the odd kid despite being a bit quirky.

[smartyjones]

Does anyone know the reason autistic kids don't make eye contact?

 

have you read Dr. Bock's book Healing the 4As - autism, allergies, ADHD and asthma? he's based in NY. i think someone on here said he was their dr. his book has some stories on pandas. i wonder where he is in the pandas treatment world. i can't fully remember but i think he had theories about vitamin A deficiencies and eye contact issues. i think it was something about the way the retina and cones of the eyes function and how vit A works with that.

[thereishope]

.

Edited October 18, 2016 by vickie

[smartyjones]

He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it.

 

have you heard of selective mutism? it's on the anxiety spectrum but as we all know, could be another presentation of pandas. we had a friend with a child with it. for years, i was concerned he had autistic tendencies. i'd notice at playdates at his house, he seemed fine, but seemed very different at other times and places. she didn't notice for a while b/c he was very bright and at home, totally comfortable.

it basically came down to that if he felt something was expected of him - i think mostly with communication - he would completely shut down.

previous to knowing about this, my friend and others(eg teacher) thought he was just the most stubborn kid they'd come across. now they treat it as an anxiety issue and more try to help him than all that goes along with thinking he's being a stubborn pain in the a**.