Autism and PANDAS

[AnitaS]

Is there anyone else out there that has a child with Autism and PANDAS? My son was diagnosed with Autism at 2 years old and PANDAS at 6. I think he has been affected with PANDAS for years but we kept attributing a lot of the behaviours to the Autism. We've seen a lot of good improvements from treating his Autism biomedically but have seen HUGE improvements since we have been treating his PANDAS with abx.

[peglem]

Is there anyone else out there that has a child with Autism and PANDAS? My son was diagnosed with Autism at 2 years old and PANDAS at 6. I think he has been affected with PANDAS for years but we kept attributing a lot of the behaviours to the Autism. We've seen a lot of good improvements from treating his Autism biomedically but have seen HUGE improvements since we have been treating his PANDAS with abx.

Well, you can tell by my signature....

I think PANDAS (and associated immune problems) caused my daughter's autism. But, remember- autism is just a label for a set of neurological symptoms. Usually the cause of those symptoms is unknown and sadly- once they call it autism its hard to get anyone to investigate the cause. Attributing it to autism is like saying the symptoms are causing the symptoms. Too much frustration for me all these years. I have to really work at not being bitter about it.

[MomWithOCDSon]

I think you'll see many affirmative responses here. Even many of us with reasonably higher-functioning (verbal and otherwise) kids have been through Aspberger and/or PDD diagnoses as a result of PANDAS' ravaging of our kids' brains. My DS's autistic traits fade significantly outside of PANDAS exacerbation, along with his OCD behaviors; abx was a real breakthrough for us, too, despite a long-standing OCD diagnosis (almost 6 years) and a more recent PDD one.

 

Glad you found PANDAS and are being given abx for treatment. The proof is in the pudding. When his doctors see his progress for themselves (video tape it if you can't or don't want to go into the doctor in person), they may look for other rationales, but the temporal connection between his PANDAS treatment and the autism abatement cannot be entirely ignored. And it probably won't be, either, by a doctor who recognizes PANDAS to begin with!

[airial95]

Our pediatrician believes that PANDAS could fall on the "Spectrum", and that it's possible when you hear of cases of folks "curing" Autism, it could be PANDAS, or something similar - finding and treating the root cause of the symptoms. Like peglem said, autism is just a definition of a collection of symptoms without recognition of the cause.

 

We too were headed for an Aspberger's dx but PANDAS treatments have eliminated all indications of any sort of autism.

 

Good luck with your treatments.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[peglem]

My son was dx'd HFA at 3-- and now at 6 we're looking at PANDAS. He showed no signs of Autism through age 2. I was recently reminded of this when I watched a video of him at 27 months-- he was initiating conversations, making/maintaining eye contact, speaking in 5-6+ word sentences (his own expressive language-- after regressing his speech became entirely echolalic). He was playing with toys and pretending-- making trains drive, make noises, etc. That was holiday video. That spring, he regressed following the same series of infections that sent his big sis into a major exacerbation- the one that first got her the OCD diagnosis. By the end of that summer his issues had become so significant we felt he needed an evaluation for Autism and after a 6 month wait to see the dev ped he was dx'd HFA (though he'd started spec ed services in the meantime under "developmental delay"). We set up a home based ABA program for him, run by a local Autism school. And he made big gains with biomed. Once we started down the PANDAS path for his sis this year, we began to look at his history through a different lens, too. Then, just in case we needed more reason to get him a PANDAS eval, too... the kids had two URIs in March and April and with those he's exploded with totally new OCD, etc. He's got an appt with our dd's PANDAS doc-- but not til July.

 

Based on things he's able to express to me now, it's possible that some or much of what we'd attributed to "rigidity" associated with Autism was more OCD-ish. It's such a muddy distinction, anyway, but with things he's done in the past and is doing again now alongside these new symptoms, he's been able to tell me why-- and they have a definite fear-leads-to-compulsion relationship that we'd never realized was causing the behavior. Example: a time/clock thing he's had in a now you see it now you don't pattern for several years he's just told me is because of two different fears: one is fearing night and not wanting it to come as quickly, and the other is fearing time is passing him by too quickly, or life going too fast (my dd has had this one at times, too). So he either has to "restart the day" by "redoing" some things (like switching the clock to "timer" so time is not showing, then eating one piece of food to represent every snack and meal he normally eats in a day to bring him back up to dinner time-- then setting the clock back on for that), or changing the clocks, freezing the timer on a certain time, or, having a meltdown if something is off about these issues or their solutions. We haven't had much rigidity for a while, and it's all come back along with new OCD and anxiety, separation anxiety/clinginess, meltdowns even bigger than during the Autism dx days--at home and in public (last weekend his biggest public meltdown ever, my dh was with him and he's is still traumatized). And he's started having urinary accidents again-- with increasing frequency (bringing him in for a urine culture tomorrow to be safe.)

 

So like you both, I've been wondering what's what with him. Could he have Autism and now PANDAS? Could he have had PANDAS all along and, as Peg so aptly put it been diagnosed with the label for a set of symptoms that seemed to match his symptoms, especially at his particular age of onset?

 

All things I will likely ponder in more depth when my children are not going off like firecrackers all around me... But once I get them extinguished for the evening I do want to get back on and post about "atypical" PANDAS-- especially w/ those who straddle the ASD/PDD and PANDAS dxs... got to figure my poor little guy out!

 

TH

Bolding mine- But that's the other frustrating thing about the autism "dx"- everything is looked at through the autism filter and a special autism vocabulary is applied. OCD is rigidity or needing to stick to a schedule. Chorea/tics are "stimming". And to make matters worse- schools reinforce the ocd by insisting that autistic kids need a strict schedule. And many programs work at extinguishing "stims"- you'd never do that to a kid diagnosed with tics.

[Johnsmom]

So isnt Autism PANDAS?

[AnitaS]

My son was dx'd HFA at 3-- and now at 6 we're looking at PANDAS. He showed no signs of Autism through age 2. I was recently reminded of this when I watched a video of him at 27 months-- he was initiating conversations, making/maintaining eye contact, speaking in 5-6+ word sentences (his own expressive language-- after regressing his speech became entirely echolalic). He was playing with toys and pretending-- making trains drive, make noises, etc. That was holiday video. That spring, he regressed following the same series of infections that sent his big sis into a major exacerbation- the one that first got her the OCD diagnosis. By the end of that summer his issues had become so significant we felt he needed an evaluation for Autism and after a 6 month wait to see the dev ped he was dx'd HFA (though he'd started spec ed services in the meantime under "developmental delay"). We set up a home based ABA program for him, run by a local Autism school. And he made big gains with biomed. Once we started down the PANDAS path for his sis this year, we began to look at his history through a different lens, too. Then, just in case we needed more reason to get him a PANDAS eval, too... the kids had two URIs in March and April and with those he's exploded with totally new OCD, etc. He's got an appt with our dd's PANDAS doc-- but not til July.

 

Based on things he's able to express to me now, it's possible that some or much of what we'd attributed to "rigidity" associated with Autism was more OCD-ish. It's such a muddy distinction, anyway, but with things he's done in the past and is doing again now alongside these new symptoms, he's been able to tell me why-- and they have a definite fear-leads-to-compulsion relationship that we'd never realized was causing the behavior. Example: a time/clock thing he's had in a now you see it now you don't pattern for several years he's just told me is because of two different fears: one is fearing night and not wanting it to come as quickly, and the other is fearing time is passing him by too quickly, or life going too fast (my dd has had this one at times, too). So he either has to "restart the day" by "redoing" some things (like switching the clock to "timer" so time is not showing, then eating one piece of food to represent every snack and meal he normally eats in a day to bring him back up to dinner time-- then setting the clock back on for that), or changing the clocks, freezing the timer on a certain time, or, having a meltdown if something is off about these issues or their solutions. We haven't had much rigidity for a while, and it's all come back along with new OCD and anxiety, separation anxiety/clinginess, meltdowns even bigger than during the Autism dx days--at home and in public (last weekend his biggest public meltdown ever, my dh was with him and he's is still traumatized). And he's started having urinary accidents again-- with increasing frequency (bringing him in for a urine culture tomorrow to be safe.)

 

So like you both, I've been wondering what's what with him. Could he have Autism and now PANDAS? Could he have had PANDAS all along and, as Peg so aptly put it been diagnosed with the label for a set of symptoms that seemed to match his symptoms, especially at his particular age of onset?

 

All things I will likely ponder in more depth when my children are not going off like firecrackers all around me... But once I get them extinguished for the evening I do want to get back on and post about "atypical" PANDAS-- especially w/ those who straddle the ASD/PDD and PANDAS dxs... got to figure my poor little guy out!

 

TH

[nicklemama]

We were told my DS had Asperger's at age 6y9m. He is currently 7y4m. I tried to tell the neuropsych that he hadn't always been like that. He only became that way after the FluMist a year earlier. He told me my DS always had those behaviors, I just didn't notice them! LOL. I'll admit, he had a lot of aspergerish/autistic behaviors at that time. Two weeks later, he was diagnosed w/ PANDAS, put on antibiotics and the aspergerish behaviors, most especially the loss of social skills, went away. Today, nobody would say he had Aspergers.

 

My personal opinion is there are a lot of misdiagnosed autistic and Asperger's kids out there that actually have PANDAS. I believe a big factor is my DS's misdiagnosis has to do w/ the fact that he has never had a documented case of strep and his titers are normal.

[AnitaS]

Thank you for sharing. I too have spent the last few months wondering if what we thought was Autism has been PANDAS all along. My son never progressed typically. He had many infections (pneumonia, ear infections,etc.) in the first year and a half and never spoke. He was diagnosed with severe Autism. Fortunately, with biomedical interventions he began to get healthy, speak, read (is hyperlexic) and finally in the last year and a half play. He is in Grade One in a regular classroom with an EA and is successfully working on grade level expectations. We were thrilled but..........he continued to be extremely agitated at times, would go through periods where he wouldn't leave the house for 3 weeks, cough every 10 seconds, eat the same 3 foods for months and months, exhibit other OCD behaviours and have bouts of frequent urination (going every 10 minutes some days). I don't know how many times over the years we had him tested for UTI's.

 

Then came the PANDAS diagnosis. I didn't believe it at first. My head was so consumed with the Autism thing but when we started the antibiotics (which was difficult, since we had spent the last 4 years trying to avoid taking them) we were convinced. The worst of his symptoms disappeared. We took my son on a trip to Disney World at Christmas when just a few months before we didn't dare take him to the grocery store. It all has been very amazing and extremely exhausting.

 

I am wondering what this PANDAS path looks like. Do we treat an exacerbation and then just wait and hold our breath until another one consumes us....??? Are there any supplements etc that I can give my son to give him a fighting chance? I have read that kids are exposed to strep 11 times a year.

[peglem]

So isnt Autism PANDAS?

Probably many people with autistic symptomology have PANDAS. But there are many things that can affect parts of the brain and interfere with development or cause regression in development. Just my opinion.

[MomWithOCDSon]

I tried to tell the neuropsych that he hadn't always been like that. He only became that way after the FluMist a year earlier. He told me my DS always had those behaviors, I just didn't notice them! LOL.

 

We ran into the same thing with our psych, only her explanation was that, rather than the behaviors always being there and we failed to notice, DS's Aspberger/PDD behaviors were "growing" in frequency and intensity as he got chronologically older and the gap between what was expected of him (especially socially) and what he was capable of widened that much more. I think, especially because she hadn't known him for an extended period and seen how "non-Aspberger/PDD-ish" he generally is outside of an exacerbatory period, she made assumptions about who he is and how he functions.

 

Now that he's coming out of exacerbation again, though, she's come around; we've been able to "leverage" his behavior both at sessions with her and via videotape to demonstrate to her that those behaviors are really just part of the whole PANDAS symptomology. Now she's on board.

[MomWithOCDSon]

I am wondering what this PANDAS path looks like. Do we treat an exacerbation and then just wait and hold our breath until another one consumes us....??? Are there any supplements etc that I can give my son to give him a fighting chance? I have read that kids are exposed to strep 11 times a year.

 

I know it can seem overwhelming, especially changing "horses" in the middle of the stream, as it were. We were in a similar boat a couple of years ago, having been immersed in an OCD diagnosis and all that comes with it for nearly 6 years prior to PANDAS. But it gets easier, and all the folks here on the forum can be great resources for you as they've been for us.

 

As you have the time and energy, I would paw through the Pinned Threads at the top of this PANDAS forum for some of the basic information and some treatment protocols that have worked well for other families. Many others here also use biomed responses to help keep their kids healthy and to respond to strep exposures. Natural anti-inflammatory supplements are also a favorite, and you'll find lots of threads here regarding items like curcumin, tumeric, quercitin, Vitamin D3, fish oil, and probiotics.

 

Good luck to you!

[AnitaS]

I am wondering what this PANDAS path looks like. Do we treat an exacerbation and then just wait and hold our breath until another one consumes us....??? Are there any supplements etc that I can give my son to give him a fighting chance? I have read that kids are exposed to strep 11 times a year.

 

I know it can seem overwhelming, especially changing "horses" in the middle of the stream, as it were. We were in a similar boat a couple of years ago, having been immersed in an OCD diagnosis and all that comes with it for nearly 6 years prior to PANDAS. But it gets easier, and all the folks here on the forum can be great resources for you as they've been for us.

 

As you have the time and energy, I would paw through the Pinned Threads at the top of this PANDAS forum for some of the basic information and some treatment protocols that have worked well for other families. Many others here also use biomed responses to help keep their kids healthy and to respond to strep exposures. Natural anti-inflammatory supplements are also a favorite, and you'll find lots of threads here regarding items like curcumin, tumeric, quercitin, Vitamin D3, fish oil, and probiotics.

 

Good luck to you!

[AnitaS]

Thanks Nancy. I have already found this Forum extremely helpful and am looking forward to learning more. It is so great to be able to connect with others who are going through the same thing.