Is this OCD or normal childhood behavior?

[Tattoomom]

Tatoomom

 

my son has done this since very young

 

we were told by both his developmental pediatrician as well as his neuro and also a psychiatrist and psychologist that this was part of the OCD that he has comorbid with his Tourette Syndrome so yes, it sounds like OCD to me

 

most kids (and some adults lol ) do get fixated on stuff and take it to extreme--- but what you are describing really reminds me of the OCD I see in both my son (and hubby)

 

Certainly from our experience, not only aspergers kids have this kind of fixation/repetitive behavior. My son has other friends with TS, and they show it too and yes, so do some with ADHD

 

oh boy do I remember the Pokemon days and dreading entering Target with him wanting every pokemon thing in site and then talking about them for the next who knows how long................

 

 

Thanks Chemar! The more I read, the more I think my ds might have TS. And although we've dealt with tics on and off for 3 years now, he's never went a year ticcing... he always takes a long break!

[peglem]

I think people need to change the way they think of autism (and a lot of psychiatric disorders). Professionals act as though autism is actually a diagnosis...they treat it like one. But all it really is, and the way it is "diagnosed" is just an observation of symptoms...period. Its sooooooo frustrating to have this "diagnosis" because nobody will look for the cause of what is really SYMPTOMS of something neurological. As long as they have this nice neat label posing as a diagnosis, they can use it to explain away everything and anything that comes along. I am so sick of this.....yes, my daughter has symptoms of autism....BUT, the cause is disruption of her development by PANDAS.

 

I've made the comparison before: Its like a person going to the doctor with a swollen, bruised leg- it may be broken, may be arthritis...could be a lot of things, but the doctor diagnoses swellbruise syndrome and sends them on their way with the observation that people with this disorder often have trouble walking and a lot of pain....here's my bill and good luck with that. Maybe the doc recommends therapy to help them walk better, but that's largely unsuccessful because it hurts too much- now they are uncooperative with therapy- their fault they aren't improving.....

That's how I feel about an autism "diagnosis". And if an explanation is found that accounts for the symptoms- the exact same disorder is no longer called autism.

[Tattoomom]

Just because you love Star wars, buy the toys and leave them unopened in boxes, don't let your kids touch them and have insurance on them (my husband) doesn't always mean it is full fledge OCD:)

 

That cracked me up!

[Tattoomom]

I think people need to change the way they think of autism (and a lot of psychiatric disorders). Professionals act as though autism is actually a diagnosis...they treat it like one. But all it really is, and the way it is "diagnosed" is just an observation of symptoms...period. Its sooooooo frustrating to have this "diagnosis" because nobody will look for the cause of what is really SYMPTOMS of something neurological. As long as they have this nice neat label posing as a diagnosis, they can use it to explain away everything and anything that comes along. I am so sick of this.....yes, my daughter has symptoms of autism....BUT, the cause is disruption of her development by PANDAS.

 

I've made the comparison before: Its like a person going to the doctor with a swollen, bruised leg- it may be broken, may be arthritis...could be a lot of things, but the doctor diagnoses swellbruise syndrome and sends them on their way with the observation that people with this disorder often have trouble walking and a lot of pain....here's my bill and good luck with that. Maybe the doc recommends therapy to help them walk better, but that's largely unsuccessful because it hurts too much- now they are uncooperative with therapy- their fault they aren't improving.....

That's how I feel about an autism "diagnosis". And if an explanation is found that accounts for the symptoms- the exact same disorder is no longer called autism.

 

 

Well said...I completely agree.

[thereishope]

My son has PANDAS OCD. The psychologist found it interesting. He never had tics as his PANDAS symptom, but his OCD was a combo of classic OCD with some characteristics of what she said was the OCD that is exhibited by someone with TS. So that leads me to believe that the OCD exhibited by PANDAS kids really can vary. Maybe some have all classic OCD, some have the OCD associated with TS and some have a combo.

[thereishope]

How do insurance companies "treat" autism now? Are they continuing the push to consider it a diagnosis so they don't have to pay for certain services?

 

I think people need to change the way they think of autism (and a lot of psychiatric disorders). Professionals act as though autism is actually a diagnosis...they treat it like one. But all it really is, and the way it is "diagnosed" is just an observation of symptoms...period. Its sooooooo frustrating to have this "diagnosis" because nobody will look for the cause of what is really SYMPTOMS of something neurological. As long as they have this nice neat label posing as a diagnosis, they can use it to explain away everything and anything that comes along. I am so sick of this.....yes, my daughter has symptoms of autism....BUT, the cause is disruption of her development by PANDAS.

 

I've made the comparison before: Its like a person going to the doctor with a swollen, bruised leg- it may be broken, may be arthritis...could be a lot of things, but the doctor diagnoses swellbruise syndrome and sends them on their way with the observation that people with this disorder often have trouble walking and a lot of pain....here's my bill and good luck with that. Maybe the doc recommends therapy to help them walk better, but that's largely unsuccessful because it hurts too much- now they are uncooperative with therapy- their fault they aren't improving.....

That's how I feel about an autism "diagnosis". And if an explanation is found that accounts for the symptoms- the exact same disorder is no longer called autism.

[peglem]

How do insurance companies "treat" autism now? Are they continuing the push to consider it a diagnosis so they don't have to pay for certain services?

In my state, autism qualifies as a lifelong disability which automatically makes you eligible for medical medicaid. They will pay for all kinds of services and therapies. And though the ABA folks have worked very hard to show it is the only "proven" therapy for autism (their research shows a wide variety of results, but there is a ton of it), it has been not effective (perhaps even detrimental) at all for my daughter. There really continues to be NO TREATMENT for autism, nada- send them to psychiatrists, educate them out of it....for my daughter nobody knows what to do, and they all think another field should handle it- and you get passed around.

 

The bigger problem is, I think, physicians.....they see the autism as a finality, the "diagnosis" that explains everything. Honestly, I have heard the most assinine things from doctors.....Everything in my daughters medical history previous to finding her current pediatrician (when she was 10) was chalked up to autism. Wow, didn't realize I still had so much anger over this... They missed her chronic strep...all that drooling (because it HURT to swallow) was poor oral motor skills, The 3 days she couldn't walk, but dragged her legs behind her as she pulled herself with her arms- must be just fine, because its resolved now. She was sick ALL the time- "must be allergies" that happens a lot in autism. We were told she couldn't get a GI work up unless she complained of stomach pains....she couldn't express herself well enough to complain about anything!

 

Sorry Vickie...

 

Anyway, Our current (angel) pediatrician has been so good about trying to help us figure things out...still he sends us out to specialists with that same old attitude. Our local children's hospital is the worst, for specialists dismissive of autism.

 

Hence, my thoughts that they should stop looking at autism as a diagnosis, and start seeing that its just symptoms....you look for a cause when you see symptoms. When you have a diagnosis, you think you found the cause!

[thereishope]

Don't apologize!

 

I really believe there is a bridge to be built between the "autism community" and the "PANDAS community". There's a lot we can learn from each other. Have you approached autism organizations that you support to voice your fight and how PANDAS is part of it? I know life is busy and you have your hands full, but you should consider it.

 

Do you have a theory or opinion about how many kids diagnosed with autism actually had PANDAS surface in infancy or toddlerhood?

[Suzan]

Edit....

[smartyjones]

I really believe there is a bridge to be built between the "autism community" and the "PANDAS community". There's a lot we can learn from each other.

 

 

yes, vickie - i agree! when we were first trying to figure out what was going on with pands son - at the time, 4 years, 4 mohths - i found much info in the autism community!

[MomWithOCDSon]

How do insurance companies "treat" autism now? Are they continuing the push to consider it a diagnosis so they don't have to pay for certain services?

In my state, autism qualifies as a lifelong disability which automatically makes you eligible for medical medicaid. They will pay for all kinds of services and therapies. And though the ABA folks have worked very hard to show it is the only "proven" therapy for autism (their research shows a wide variety of results, but there is a ton of it), it has been not effective (perhaps even detrimental) at all for my daughter. There really continues to be NO TREATMENT for autism, nada- send them to psychiatrists, educate them out of it....for my daughter nobody knows what to do, and they all think another field should handle it- and you get passed around.

 

The bigger problem is, I think, physicians.....they see the autism as a finality, the "diagnosis" that explains everything. Honestly, I have heard the most assinine things from doctors.....Everything in my daughters medical history previous to finding her current pediatrician (when she was 10) was chalked up to autism. Wow, didn't realize I still had so much anger over this... They missed her chronic strep...all that drooling (because it HURT to swallow) was poor oral motor skills, The 3 days she couldn't walk, but dragged her legs behind her as she pulled herself with her arms- must be just fine, because its resolved now. She was sick ALL the time- "must be allergies" that happens a lot in autism. We were told she couldn't get a GI work up unless she complained of stomach pains....she couldn't express herself well enough to complain about anything!

 

Sorry Vickie...

 

Anyway, Our current (angel) pediatrician has been so good about trying to help us figure things out...still he sends us out to specialists with that same old attitude. Our local children's hospital is the worst, for specialists dismissive of autism.

 

Hence, my thoughts that they should stop looking at autism as a diagnosis, and start seeing that its just symptoms....you look for a cause when you see symptoms. When you have a diagnosis, you think you found the cause!

 

Wow, Peg, it really sounds like you and your daughter have been through the wringer! Not only is some anger warranted, it's probably one of the healthiest reactions you could have! It's motivating, isn't it? It certainly galvanizes me, especially when what's angering me is some "authority's" ignorance!

 

I mentioned in another post this book "Right Brained Children in a Left Brained World" by Jeffrey Freed. I really think any parent who's had a kid who's been described with any autistic, ADD, ADHD or even PDD behaviors would find it enlightening and encouraging. In short, Freed's premise is that this prevasive tendency to label our children is borne out of an educational system that isn't equipped to deal with the evolution of our childrens' brain development over the last several decades. Our kids come into the world now with all this visual stimulation . . . black, white and red mobiles over the crib, Baby Einstein videos, tot computer games/programs, etc. And then we pack 'em off to schools where a predominantly 1930's-era, Germanic educational system ("kindergarten") expects them to be auditory, linear learners. So when they get bored, are easily distracted, can't follow all the verbal cues and information thrown at them, are more focused on dinosaurs than they are on the lesson in front of them, etc., they get labeled and diagnosed and recommended for therapies and drugs, etc. In other words, our kids are more "right-brained" than any generation before them, and if our teaching styles could just keep pace with the visual, whole-to-part right-brained learning model, there'd be far less dissonance in the classroom, far less need to label, and far less controversy over the labeling. And the far end of the right-brained spectrum, says Freed, is where the catch-all "autism" label resides.

[peglem]

Honestly people, when you talk about your children's PANDAS symptoms....its autism, the difference being that your onset happened after language and early childhood development occurred....they call OCD different things in the autism community- perseveration, stimming, echolalia (which may actually be a tic).

 

I think many autistic kids have PANDAS at the root of their autism...I think many have something else, but darn, they need to start looking beyond genes- I stopped contributing to autism research because the lion's share of the cash was going towards looking for a gene....not even close yet- they haven't found one. I'm very interested in what Susan Swedo is doing with autism research- she's on the right track, I think. She wants to tease out phenotypes to check for children who are likely to have similar causes....and she's looking at immune function. I guess its possible that she has recognized similarities between PANDAS and autism...

 

As far as talking to the autism community about this...SOME DAN doctors at least recognize PANDAS, I'm not sure how far many of them would be willing to go as far as (GASP!) antibiotics and non alternative approaches. From what I hear there are some DAN doctors who really want to just try IVIG with autistic kids. Not sure that's a good approach either.

 

Anyway, I didn't want to turn this into a thread about autism. I appreciate you guys validating my feelings, among other things. I'm just forging ahead.

 

A bright spot...Allie's pediatrician DOES get PANDAS... and he understands that this caused the autism. After talking with Dr. Cunningham and Dr. Latimer and seeing the reasearch, he told me that he doesn't think Allie has autism. He thinks this has been the problem all along. I explained my "SYMPTOMS theory" to him. And he has 2 other patients (younger than Allie) that he thinks have PANDAS as well. He's got a lot riding on Allie's treatment success- he wants to learn how to help those other kids, too. AND he is a professor at an osteopathic med school here in Phoenix- he makes sure his students (they intern with him) meet Allie and learn about this- he even presented her case to his class. He is spreading the word on this as much as he can and is so happy to be able to save some kids that would probably otherwise end up in psychiatry. So, i guess Allie is doing her part to educate the medical profession!

[thereishope]

I've thought that for awhile. I stumbled on a website a bit ago that was interesting. The dr 's theory was that autism, Asperger's, OCD, ADD all stem for the same thing. It just manifests in different ways depending on what age it surfaces. I was going to email him his opinion about PANDAS, but never did. The website was put up around 2003.

 

I'm glad we're having this conversation about autism. Granted, perhaps it should have been in a separate thread so more may have hit on it. But then this forum does have a tendency of going off topic. The connection is is occassional touched here but, to my suprise, hasn't had a real coversation devoted to it.

 

Honestly people, when you talk about your children's PANDAS symptoms....its autism, the difference being that your onset happened after language and early childhood development occurred....they call OCD different things in the autism community- perseveration, stimming, echolalia (which may actually be a tic).

[ajcire]

peglem, sorry to get back off topic but when you said your dd couldn't walk and dragged her legs was it due to pain or something else? My dd (non pandas but I'm not so sure anymore) yesterday was on the floor screaming about her leg, laying on her back and dragging her body with her leg in the air.. said it hurt if her leg touched anything....she was screaming like there was no tomorrow but she was in a fit over something else at the moment too. Later when she was calm I asked her if her leg really hurt so bad or if she just didn't want to walk on it and she kinda had a funny look on her face and said that it hurt a little but then she just didn't want to. I wish I knew when things really hurt or or not.

[peglem]

peglem, sorry to get back off topic but when you said your dd couldn't walk and dragged her legs was it due to pain or something else? My dd (non pandas but I'm not so sure anymore) yesterday was on the floor screaming about her leg, laying on her back and dragging her body with her leg in the air.. said it hurt if her leg touched anything....she was screaming like there was no tomorrow but she was in a fit over something else at the moment too. Later when she was calm I asked her if her leg really hurt so bad or if she just didn't want to walk on it and she kinda had a funny look on her face and said that it hurt a little but then she just didn't want to. I wish I knew when things really hurt or or not.

It seemed like her hips were hurting, but she was only about 4 years old and not talking. I was alarmed and terrified. But I don't really know if she was unable to make her legs work right or if there was really pain.