Is this OCD or normal childhood behavior?

[ajcire]

Thanks.... my dd is 5 1/2. She sounded in pain but then seemed to indicate it hurt at first a bit but she just kept it going.

 

 

 

 

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.

[harmony]

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.

During episodes My son gets severe knee pain in the mornings and sometimes after sitting on the bus for 1 1/2 hours. The knee pain is normally the wake up call that he is about to get sick - normally within 1-2 days.

[Worried_Dad]

Just wanted to share our own experience with DAN docs.

 

In my son's case, nobody else local had any interest in treating him other than recommending psych meds. The local doc who did originally diagnose him (with ARF / SC at first, later PANDAS) was a DAN doc. He was great: open-minded, willing to listen, willing to prescribe the steroid burst and abx per Dr. K, etc. He definitely emphasized diet and nutritional supplements in conjunction with that, but he never "blew us off" or ignored the guidance of out-of-state experts like the others did. And - best of all - he wanted to learn more about PANDAS; even attended conference sessions on it specifically because of our son. He rocked!

 

Then he passed away of a heart attack in late 2008. We spent almost a year searching (fruitlessly) for any other local doc willing to help our son. Three pediatricians turned him down because they "weren't equipped to deal with something like that." Specialists (ped neuros, infectious disease docs, child psych) just said it wasn't PANDAS, or PANDAS wasn't a "proven clinical entity," or there were no proven treatments... and offered no help. They ignored the articles, the input from Dr. K, Dr. L, the Cunningham test results, etc.

 

Then, finally after a year of searching, we found another wonderful local doc completely open to the PANDAS diagnosis and to doing whatever she can to help our son. She happens to be another DAN doc. When I met with her separately - armed with a copy of "Saving Sammy" and begging for a chance to try the high-dose augmentin - she looked at me and said "absolutely, that's worth a try." And she immediately wrote our son a script for 3 months of augmentin XR!!! After many months of getting the medical doors slammed in our faces locally, I can't begin to tell you what a relief that was!

 

I know everybody's experience is different. For us, though, I just can't imagine where our son would be without the help of these two DAN docs.

 

 

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.

[thereishope]

One of my biggest worries I have....I don't know if the word "worry" is it, is how many kids cannot get help because of funds. It sickens me when I think about how you may only have a healthy kid if you have the money. People say "find the money somewhere". Well, it isn't like that for a lot of people. With people losing jobs, credit limits being lowered... some people simply can't. This is why PANDAS needs to become more accepted in the medical community. So all kids get the treatment they deserve.

 

Sorry, I brought that up since most DAN doctors do not accept insurance.

[peagreen]

very well said! We share your frustration.

 

 

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!

[Tattoomom]

One of my biggest worries I have....I don't know if the word "worry" is it, is how many kids cannot get help because of funds. It sickens me when I think about how you may only have a healthy kid if you have the money. People say "find the money somewhere". Well, it isn't like that for a lot of people. With people losing jobs, credit limits being lowered... some people simply can't. This is why PANDAS needs to become more accepted in the medical community. So all kids get the treatment they deserve.

 

Sorry, I brought that up since most DAN doctors do not accept insurance.

 

Amen, sister!

[peglem]

Worried Dad, I'm so glad you had a good experience with DAN doctors...and I think a lot of people are helped by them and get good results. I do think they are the only group actually trying to seek out solutions for autism. Like anything else, you have to be careful and search for the right one to help you. Because they fly outside (though some not as much as others) mainstream medicine and have little oversight...well there are some that I think are a little dubious. That being said, autism is not being handled well at all by the mainstream medical community, and for desperate parents, they are by and large, the only alternative.

[thereishope]

I would suggest to anyone who is having a hard time finding a doctor in their area that knows anything about PANDAS, to see if there is a DAN by them. That used to be mentioned more on this forum and it kind of stopped being mentioned. Wonder why.

[MomWithOCDSon]

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.

 

If you stumble across that site again, could you pass the link on?

 

Just based on personal experience alone, I'd bet good money he's right! I can't tell you the number of times our DS12 has been referred to as "a mixed bag." Depending on who's been evaluating him, they've noted OCD, ADD, ADHD, Asperger's, generalized anxiety, etc. We're putting all of our eggs in the PANDAS basket now, but all the behaviors, tendencies, etc. seem to be very interrelated.

[T_Mom]

Peglem,

I am so glad you have found a doctor who is willing to work with you-- that is wonderful.

All the best--