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mama4

Need advice on college readiness

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As all the other 12th graders are busy applying to colleges and writing essays about all the wonderful things they have done in high school, we are trying to solve this medical crisis called PANDAS (PANS). We think DS has been dealing with this for years with ADHD and Anxiety and only last spring has had obvious PANS symptoms-severe OCD and tics. He has been on two courses of abx and is now on a probiotic which seems to be helping. Problem is the executive function and ADHD are still very much there. He can do no independent work. None. He has barely made it through HS and has required lots of scaffolding and doesn't even take care of his basic hygiene needs. His GPA is abysmal and SAT are mediocre, but he is a very bright and curious kid-an intellectual and can discuss anything, has a great long term memory, but, again, zero Exec Function skills. He has isolated himself, has no friends and only wants to be online.

 

Family members are pressuring us to send him off to college. At this point only a local community college would accept him with his record/scores. Even if he does get into a college, it doesn't seem like the right time to send him off. I think because PANS has neuropsychiatric symptoms it is not taken as seriously. They say he needs a change of scenery to become independent. But would you do that to a kid who is battling some physical illness?

 

Are there schools (in NY or nearby NYC) that can work with a kid who is in a PANDAS flare and know how to deal with it? Maybe a postgraduate boarding school program for special needs? Anyone know of any? I've been told to look for a educational consultant. Can someone recommend one in NYC who gets Pandas?

 

I know this depends on the kid and where they are in their treatment/recovery, but I would love some advice. Friends who don't know say I am having a problem letting him go. Little do they know that I would love nothing more than to have a kid who could live independently! But even those who know are pressuring us. I worry the stress from heading off to college will trigger the worst kind of flare and he will be sent home defeated. We are going ahead and applying to some local schools. My plan is to apply to these and then if he is miraculously better next fall, allow him to live in a dorm and take classes. Another option would be a gap year, but what kind of gap year program would be able to handle a Pandas kid? Any advice is greatly appreciated.

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Does your ds have an immune deficiency? Have his IgG levels, etc. been measured? In your ds's case, I suppose I'd want to continue to explore all PANS treatment angles, although I know what a black hole that is and unfortunately it takes far too long when your time is extremely short in college app season. I'm so sorry; what a pickle.

 

Maybe a gap year is an option, with the reason focused on a medical situation (I'd feel inclined to avoid mentioning the specific neuropsychiatric effects of the health crisis). What to do will depend on what the long-term goals are, what sort of major/career, what level of college selectivity.

 

Adding: I just noticed the poor GPA and mediocre SAT that may not reflect his actual abilities. While the SAT could be retaken in a better phase of health, the GPA may keep him out of schools he might like to attend, yes? Maybe his plan for meeting his potential will involve attending some random college first and then either transferring or aiming higher for grad school, if grad school would be involved in his career plan. Still, you'd want him in a state of health where he can be successful in his classes, no matter what sort of college.

 

Alternatively, do you have a 504 plan? I'd be in touch with the learning services/special needs offices at the colleges.

 

With time so short, I'd probably feel the need to get rather aggressive with the treatment plan. Are you seeing a PANDAS specialist?

 

Is he on meds for ADHD and/or anxiety?

Edited by jan251

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I feel your pain, as we were in much the same place a couple of years ago. Fortunately for us, PANDAs hit our DS hardest when he was 12-13, so by the time he got to his junior and senior years of high school, his executive functioning and attention skills had improved/healed considerably, though he still needed a level of daily support and coaching. Following the PANDAs diagnosis, as we worked to get him back into school full-time, we were able to secure an IEP for him which, like a 504 Plan, gave him some accommodations with respect to workload, homework, assessments, etc., but additionally gave him access to a resource teacher and regular private and/or group sessions with the school psychologist to help him navigate remaining challenges in the school environment and build self-management skills.

 

Have you tried zinc for the attention issues? We found it helped our DS more than any ADHD med ever did.

 

College. First, you know your kid better than any of your friends or relatives, so I think you have to hold fast to your gut and do what you can to tune out their well-meaning, but potentially disastrous, advice. If you're not seeing signs of your DS effectively managing his needs at home, expecting him to just "step up to the plate" in an entirely new environment, without the daily supports you and your family give him, is likely a bit of a pipe-dream. Personally, I think your plan to apply to local schools and therefore have some flexibility as to whether or not he lives at home for the first couple of semesters and commutes to school, or go ahead and pack him off for the dorm, provided he shows signs of being able to manage that, is a good one. It gives everyone involved a sort of safety-net while also driving the ball down the field. While, in the end, a gap year may prove to be medically necessary, you do run the risk with that, I think, of halting any momentum you've been working to build up to this point. And it may be harder to restart it than it is to keep it rolling, if even only at a nominal pace.

 

I think you'll be hard pressed to find ANY colleges -- in NY or elsewhere -- that understand or have a plan for dealing with PANDAs. That being said, there ARE schools with disability departments knowledgeable about a lot of the PANDAS-related behavior sets such as anxiety, OCD, processing differences (including executive functioning), ASD, etc. The only way you're going to know what these disability offices are prepared for, however, will be to make appointments while you're touring the campus and meet with/talk to someone in the department. While IEP's (and 504's, I think) don't technically transfer into a college setting, many college disability departments will accept high school plan paperwork and documentation and, to the extent possible, continue on those accommodations and supports on campus. My DS's college, for instance, took his IEP documentation and agreed that: 1) the disability office would contact each of his professors to let them know that DS may need reasonable extensions from time to time, and 2) may choose to take his assessments in an alternate (quiet, private) environment. The disability office also helped us to apply and be approved for a private dorm room so that DS would have one less stressor (dealing with a roommate).

 

I don't know about an educational consultant in NY necessarily, but we attended a session at an IOCDF conference a few years ago about the college application and selection process for kids with anxiety/OCD, led by an educational consultant. She was excellent and gave us a lot of good ideas. It might take me a little time to dig it up, but I still have the hand-out (and her name) somewhere around here. If you think that might be useful, drop me a PM with an email address, and I'll dig that up and send it over to you.

 

In the end, the college transition isn't easy, but it was doable for our DS. We limited his search to schools that were within a reasonable drive-time from home, so that we could get to him, and he could get to us. We limited it to schools that had a reasonable teacher:student ratio so that he wouldn't be in a ton (if any) classes that were survey-style in auditoriums with 100-200 students and a single professor. We met with the disability offices and talked over what accommodations and supports they would actively provide or pursue. We got him a private dorm room (one such accommodation that required a letter from his doctor) so that he would have a "safe haven" to escape to or even melt down in, if necessary, at the end of a long day.

 

The first few weeks were tough. We had some tearful phone calls and FaceTime sessions. On at least two occasions, he even said, "I don't think I can do this." But we employed a little tough love. On top of encouragement and helping him think through solutions to some of his tougher moments, we also made sure he knew what the options were, i.e., if he threw the towel in on college so quickly, he'd be coming home to a different kind of lifestyle. He'd need to get a job and enroll for at least part-time classes at the local community college. There would be expectations. There would be rules. It wouldn't be a stress-free, free ride, even if he was "safe," at home.

 

And this is that critical point at which they can, and usually do (I hope) "step up to the plate." Our DS did. Things got incrementally better for him week by week. So much so that, by the holiday break, he couldn't wait for the second semester to start up again so that he could go back to school and hang out with his friends, talk to his professors, etc. He continues to gain life skills for managing in less than ideal circumstances, and he's actually happy and highly successful now in his sophomore year.

 

All the best to you. Take care!

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I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up.

 

I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.

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I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up.

 

I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.

 

Just in support of Suzanne's note, my DS's college actually has a disability program specifically geared toward Asperger's students (at an engineering school -- can you imagine!?! ;) ) In addition to appropriate accommodations, they will set up a peer mentor system so that the kids don't isolate, get behind in coursework, etc. And this is a "regular" 4-year, private university.

 

So these supportive set-ups DO exist, even if they may be somewhat unique.

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FWIW, we aren't seeing success yet with IVIg for ocd, but one really interesting, unexpected benefit of IVIg has been a big improvement in organization skills and attention. I had always assumed the add-like symptoms were a result of the ocd, but now that doesn't seem to be the case. When he's doing compulsions he can't focus on anything else, but the rest of the time, attention seems relatively normal. No more painfully sitting next to him banging my head against the wall to make sure he got his homework done, no more pointing out how many things he needs to put in his backpack. I have to remind him sometimes to get off his computer game and get started if it's getting late, but nothing like the nightmare of last year (last year was 7th gr). He has improved enough with attention that I will let him apply to a private high school this year even though his ocd is unchanged (as far as I know, his most significant ocd triggers involve me, so that leaves a lot of compulsions for home or car as opposed to interrupting his day at school). I have never heard this angle to IVIg treatment before and it would be interesting to know if anyone else has experienced this.

 

Does your ds have an immune deficiency? Have his IgG levels, etc. been measured? In your ds's case, I suppose I'd want to continue to explore all PANS treatment angles, although I know what a black hole that is and unfortunately it takes far too long when your time is extremely short in college app season. I'm so sorry; what a pickle.

 

Maybe a gap year is an option, with the reason focused on a medical situation (I'd feel inclined to avoid mentioning the specific neuropsychiatric effects of the health crisis). What to do will depend on what the long-term goals are, what sort of major/career, what level of college selectivity.

 

Adding: I just noticed the poor GPA and mediocre SAT that may not reflect his actual abilities. While the SAT could be retaken in a better phase of health, the GPA may keep him out of schools he might like to attend, yes? Maybe his plan for meeting his potential will involve attending some random college first and then either transferring or aiming higher for grad school, if grad school would be involved in his career plan. Still, you'd want him in a state of health where he can be successful in his classes, no matter what sort of college.

 

Alternatively, do you have a 504 plan? I'd be in touch with the learning services/special needs offices at the colleges.

 

With time so short, I'd probably feel the need to get rather aggressive with the treatment plan. Are you seeing a PANDAS specialist?

 

Is he on meds for ADHD and/or anxiety?

Thanks for the great advice. No one has mentioned an immune deficiency. All I know is that all of his levels on the Cunningham panel were high (not extremely high, but out of range). He has had a million tests, where would I find this?

 

Yes, the GPA is tricky. He failed math when in his very anxious state a few years ago. His college advisor says he can go to a community college, but he won't be challenged. He would do well in a program where they could watch educational shows and discuss them (versus paper writing) but I don't think that exists. He had a 504 for anxiety, but I don't think the school was motivated and mostly it would be a note taker. I think for college a good idea.

 

Yes, he has a pandas specialist (since this started last spring) and an integrative MD. Interesting about the IVIG. I suspect that a lot of his EF issues and ADHD would resolve if we could deal with the brain inflammation. He is on an SSRIS-helped A LOT with anxiety. Adderall did nothing and seemed to make him angry. I think IVIG might be in our future. I just need to figure out if insurance will cover...Thanks again!

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I feel your pain, as we were in much the same place a couple of years ago. Fortunately for us, PANDAs hit our DS hardest when he was 12-13, so by the time he got to his junior and senior years of high school, his executive functioning and attention skills had improved/healed considerably, though he still needed a level of daily support and coaching. Following the PANDAs diagnosis, as we worked to get him back into school full-time, we were able to secure an IEP for him which, like a 504 Plan, gave him some accommodations with respect to workload, homework, assessments, etc., but additionally gave him access to a resource teacher and regular private and/or group sessions with the school psychologist to help him navigate remaining challenges in the school environment and build self-management skills.

 

Have you tried zinc for the attention issues? We found it helped our DS more than any ADHD med ever did.

 

College. First, you know your kid better than any of your friends or relatives, so I think you have to hold fast to your gut and do what you can to tune out their well-meaning, but potentially disastrous, advice. If you're not seeing signs of your DS effectively managing his needs at home, expecting him to just "step up to the plate" in an entirely new environment, without the daily supports you and your family give him, is likely a bit of a pipe-dream. Personally, I think your plan to apply to local schools and therefore have some flexibility as to whether or not he lives at home for the first couple of semesters and commutes to school, or go ahead and pack him off for the dorm, provided he shows signs of being able to manage that, is a good one. It gives everyone involved a sort of safety-net while also driving the ball down the field. While, in the end, a gap year may prove to be medically necessary, you do run the risk with that, I think, of halting any momentum you've been working to build up to this point. And it may be harder to restart it than it is to keep it rolling, if even only at a nominal pace.

 

I think you'll be hard pressed to find ANY colleges -- in NY or elsewhere -- that understand or have a plan for dealing with PANDAs. That being said, there ARE schools with disability departments knowledgeable about a lot of the PANDAS-related behavior sets such as anxiety, OCD, processing differences (including executive functioning), ASD, etc. The only way you're going to know what these disability offices are prepared for, however, will be to make appointments while you're touring the campus and meet with/talk to someone in the department. While IEP's (and 504's, I think) don't technically transfer into a college setting, many college disability departments will accept high school plan paperwork and documentation and, to the extent possible, continue on those accommodations and supports on campus. My DS's college, for instance, took his IEP documentation and agreed that: 1) the disability office would contact each of his professors to let them know that DS may need reasonable extensions from time to time, and 2) may choose to take his assessments in an alternate (quiet, private) environment. The disability office also helped us to apply and be approved for a private dorm room so that DS would have one less stressor (dealing with a roommate).

 

I don't know about an educational consultant in NY necessarily, but we attended a session at an IOCDF conference a few years ago about the college application and selection process for kids with anxiety/OCD, led by an educational consultant. She was excellent and gave us a lot of good ideas. It might take me a little time to dig it up, but I still have the hand-out (and her name) somewhere around here. If you think that might be useful, drop me a PM with an email address, and I'll dig that up and send it over to you.

 

In the end, the college transition isn't easy, but it was doable for our DS. We limited his search to schools that were within a reasonable drive-time from home, so that we could get to him, and he could get to us. We limited it to schools that had a reasonable teacher:student ratio so that he wouldn't be in a ton (if any) classes that were survey-style in auditoriums with 100-200 students and a single professor. We met with the disability offices and talked over what accommodations and supports they would actively provide or pursue. We got him a private dorm room (one such accommodation that required a letter from his doctor) so that he would have a "safe haven" to escape to or even melt down in, if necessary, at the end of a long day.

 

The first few weeks were tough. We had some tearful phone calls and FaceTime sessions. On at least two occasions, he even said, "I don't think I can do this." But we employed a little tough love. On top of encouragement and helping him think through solutions to some of his tougher moments, we also made sure he knew what the options were, i.e., if he threw the towel in on college so quickly, he'd be coming home to a different kind of lifestyle. He'd need to get a job and enroll for at least part-time classes at the local community college. There would be expectations. There would be rules. It wouldn't be a stress-free, free ride, even if he was "safe," at home.

 

And this is that critical point at which they can, and usually do (I hope) "step up to the plate." Our DS did. Things got incrementally better for him week by week. So much so that, by the holiday break, he couldn't wait for the second semester to start up again so that he could go back to school and hang out with his friends, talk to his professors, etc. He continues to gain life skills for managing in less than ideal circumstances, and he's actually happy and highly successful now in his sophomore year.

 

All the best to you. Take care!

Thanks for the excellent advice. My DS's symptoms started at that age too, but we had no idea what it was. We were told just anxiety, but in retrospect I see that it was the beginning of PANS. I think Dr. K at the conference mentioned this is often how it manifests in teens. We haven't tried zinc. That is next in the treatment plan given to us by the integrative MD. I am really hoping it works! Interesting that this helped with the attention issues. Your story sounds great and I hope we can get this under control. I worry we waited too long to get diagnosed. I so appreciate your advice!

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I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up.

 

I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.

Yes, I have always considered autism. The social issues were a red flag from the beginning. He has had three educational psych evaluations, one recent neuropsych eval and although he does have some features of autism, no one has said autism. He has the social issues, transition issues, rigidity, but not any of the others. After reading Ken Bock's book, I wonder whether the neuroinflammation is causing some ADHD and autistic features which put him somewhere on the spectrum between ADHD and PDD-NOS (although he is very verbal). This has always been our problem, he is a mystery. We have friends with aspergers kids and they do really well in the special needs camps etc, my son would pick up on it and say "that's not me." But maybe a place where the kids have ADHD? This was his last diagnosis as the lack of social skills can be a part of that too. Oddly sometimes he has amazing social skills, but he tends to space out and lose track of where he is. I swear it is the inflamed brain! I will look into the programs and thanks for the advice!

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I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up.

 

I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.

 

Just in support of Suzanne's note, my DS's college actually has a disability program specifically geared toward Asperger's students (at an engineering school -- can you imagine!?! ;) ) In addition to appropriate accommodations, they will set up a peer mentor system so that the kids don't isolate, get behind in coursework, etc. And this is a "regular" 4-year, private university.

 

So these supportive set-ups DO exist, even if they may be somewhat unique.

 

Thank you. I wonder whether we would be one of those stories where the kid has the neuroinflammation treated and they lose the ADHD, EF and borderline autism issues. Wishful thinking! He puzzles the experts-the neuropsychologist said not autism, but said severe ADHD can mimic some of the features of autism-like social skills issues. They sort of come and go. Either way, he needs the scaffolding. I will start talking to some colleges.

 

I think the fact that some kids lose their ADHD autism diagnosis when their PANDAS/PANS is treated is very telling. I tend to agree with the theory that ADHD and autism are on some level an autoimmune diseases. Maybe not all cases, but certainly some. I just don't want to get my hopes up that treating PANS would solve his other issues. Thank so the advice!

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Anyway, on the immune system health, probably your PANDAS specialist tested for that. Look for the bloodwork for IgG levels, total and subclasses, and IgM/IgE/IgA total. Also look for whether your doc tested for other types of infections. There are many other tests that our immunologist has done on various immune parameters, but I guess IgG levels are probably the first and most crucial to look at initially.

 

For an immune system deficiency, if you have all the required pieces for the diagnosis, insurance may cover low-dose, replacement IVIg. I haven't noticed any posts on this forum where someone got insurance coverage for high, treatment-dose IVIg for PANDAS - it's usually considered investigational. Though, it could be that I just don't remember. (We did not get coverage even for the immune deficiency; insurance can be picky or it can depend on the luck of the insurance person reviewing the records.) What I don't know and might be important to consider is whether there are any autoimmune conditions for which insurance might cover high-dose IVIg - I'd like to know if anyone has any info.

 

On the college, I'd be concerned about starting even community college if he isn't yet set up for success due to his attention and EF issues. If he wants to transfer to a more challenging college later, he would still need great grades from the CC. That's what would have me leaning toward a gap year - or perhaps better, maybe taking only one or two CC courses at a time, just to keep even the barest intellectual stimulation - with the health excuse, until his ADHD issues are really handled in whatever way possible.

 

So sorry about all this. I hate PANDAS.

Edited by jan251

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Hello, I have what I believe to be pure obsessional OCD which revolves around OCD of all things. (Any assistance on this would be appreciated as it is constant) Anyways I am commenting because I am attending Coastal Carolina University, and even though my mind isn't in the best shape I am pushing through the best I can. I wouldn't start unless he is doing better than he ever has. I got sick during school. Anyways, and surprisingly, the school psychiatrist knows about PANDAS.

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Hello, I have what I believe to be pure obsessional OCD which revolves around OCD of all things. (Any assistance on this would be appreciated as it is constant) Anyways I am commenting because I am attending Coastal Carolina University, and even though my mind isn't in the best shape I am pushing through the best I can. I wouldn't start unless he is doing better than he ever has. I got sick during school. Anyways, and surprisingly, the school psychiatrist knows about PANDAS.

 

I am sorry you are suffering. I hope someone else will respond who knows more about this. We had luck with Augmentin (and probiotics) for OCD and tics-hope it holds. Are you seeing a Pandas/Pans specialist? And thank you for the advice-I appreciate it!

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Re: the topic of autism and the autism-like characteristics some of our kids exhibit - Dr. Swedo said something near the end of the conference last month that made so much sense. I don't remember the context of the question (it did have something to do with a dual autism/PANDAS dx) but her answer included that she didn't so much see those similar characteristics in non-autistic PANDAS patients as "autistic-like" as much as she considers them to be "encephalitic". I nearly jumped out of my seat and yelled, "Yes! That's it!"

 

I've struggled for so long with people assuming my child is autistic when I never thought that and no diagnostician had ever diagnosed him as such (some non-diagnosticians in the therapy and teaching world diagnosed ME as the "worst case of denial they had ever seen" - but he didn't meet the criteria for an autism dx and all the DOCTORS were saying "it isnt' autism but they didn't know what it was", so I wasn't going to label him incorrectly and put him in a world in which he didn't belong and I'm forever thankful I didn't.

 

When Dr. Swedo said the behaviors were characteristic of being encephalitic - it finally fell into place.

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Re: the topic of autism and the autism-like characteristics some of our kids exhibit - Dr. Swedo said something near the end of the conference last month that made so much sense. I don't remember the context of the question (it did have something to do with a dual autism/PANDAS dx) but her answer included that she didn't so much see those similar characteristics in non-autistic PANDAS patients as "autistic-like" as much as she considers them to be "encephalitic". I nearly jumped out of my seat and yelled, "Yes! That's it!"

 

I've struggled for so long with people assuming my child is autistic when I never thought that and no diagnostician had ever diagnosed him as such (some non-diagnosticians in the therapy and teaching world diagnosed ME as the "worst case of denial they had ever seen" - but he didn't meet the criteria for an autism dx and all the DOCTORS were saying "it isnt' autism but they didn't know what it was", so I wasn't going to label him incorrectly and put him in a world in which he didn't belong and I'm forever thankful I didn't.

 

When Dr. Swedo said the behaviors were characteristic of being encephalitic - it finally fell into place.

Yes! This is spot on. It is so hard for these kids (and parents) to have a mystery dx. At least now we know it is PANDAS and have an explanation. It is a relief in a way. In her book Infectious Madness, Harriet Washington discusses Pandas and asks whether parents are just looking for a biological explanation for their kids' psychiatric issues (because of the stigma). She seems to conclude that that is not the case and that Pandas is real.

 

You can see why the autism community is interested in Pandas. The encephalitic/autoimmune connection between the two is a clue. Also the fact that some kids have lost their dx for autism when treated for Pandas is very telling. I would love to see some data on this-how many kids who were dx'ed with ADHD or an autism spectrum disorders were able to lose the dx after treatment.

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