Dr. T's latest

[EAMom]

As far as I know, there is zero cognitive decline in these girls. None. I would bet that the Cunningham test would be normal. Just my guess. But my theory is that out of control autoantibodies cause cognitive decline of some sort. Just like most autoimmune diseases with neuropsychiatric symptoms( ie. NMDA encephalitis).

 

PANDAS isn't supposed to cause cognitive decline per se. PANDAS kids do have problems with visual-contructive and visual spacial memory recall. Also, I wonder if handwriting and focus/mood/attention/OCD account for some PANDAS kids school issues. But, other PANDAS kids seem to "hold it together" academically (if they can attend school). Remember Saving Sammy was still doing amazing math in competitions when he had PANDAS. Also, I don't know if Emerson is still around? But we think she had PANDAS and she was a straight A student. Also, maybe older kids are impacted slightly differently. http://www.ncbi.nlm.nih.gov/pubmed/22231309

 

This study presents a preliminary illustration of neuropsychiatric

functioning in youth with PANDAS.

Notably, young people with PANDAS presented with

markedly impaired performance on tasks of visual-constructive

and visual-spatial recall memory. The only

extant examination of neuroexecutive defects in youth

with PANDAS did not find large group differences on

tasks of visual-spatial planning and organization.13

These profound deficits are in the context of no other

identified neurocognitive impairments within a sample

that exhibited academic achievement scores well above

average. This is consistent with previous findings suggesting

no difference in intellectual functioning between

youth with PANDAS and healthy controls.13

Also, recognition memory appeared intact.

 

But, really, to say if the Le Roy teens had cognitive decline...that would be hours and hours (and $$) of testing to determine that. Plus, if they aren't even in school, how would they know unless it was really severe? And then if you take into consideration that (at least those that went to Dent) may be on MULTIPLE (one girl was on 9 anti-tic and psych. meds) psych./tic meds, you might not know if any decline was PANDAS (or PANDAS-like) or the meds.

Edited March 5, 2012 by EAMom

[PhillyPA]

EAMOM if the information your present is correct than I am more certain than ever that my son does not have pandas. No cognitive tests needed to be done to see that my son collapsed at age five. It was sudden and apparent when he could no longer talk. Although he meets all five criteria of Swedo's pandas diagnosis, I highly doubt it is pandas. If most pandas children do not experience a cognitive collapse than I am correct in my assessment that my son does not have pandas. My impression after reading Saving Sammy was that he was so overwhelmed with OCD he was barely functioning as a human being. In my memory of the book, he won that big math competition as he was on the road to recovery.

 

My son was perfectly healthy and normal up until age 5. He was not on the spectrum.

[mkur]

I don't even believe that my son has pandas. After being 100% sure that it was pandas, I have come to the conclusion that I know nothing. I believe it was LLM that said something like we think we are 100% sure about something and then it turns out we are not. That is where I have been for a while. I believe that if my son had pandas he would be better by now. I think my son falls into the category of "something else".

 

You son can be pandas plus a comorbid condition. Example: Tourettes(tics)+OCD+ADHD this is very common for TS and is referred to as trifecta and in our case equals pandas.

[EAMom]

EAMOM if the information your present is correct than I am more certain than ever that my son does not have pandas. No cognitive tests needed to be done to see that my son collapsed at age five. It was sudden and apparent when he could no longer talk. Although he meets all five criteria of Swedo's pandas diagnosis, I highly doubt it is pandas. If most pandas children do not experience a cognitive collapse than I am correct in my assessment that my son does not have pandas. My impression after reading Saving Sammy was that he was so overwhelmed with OCD he was barely functioning as a human being. In my memory of the book, he won that big math competition as he was on the road to recovery.

 

My son was perfectly healthy and normal up until age 5. He was not on the spectrum.

 

Do you mean he couldn't talk as in he developed Autistic symptoms? or he didn't have the intellect to talk? or something else?

 

Unfortunately, not all PANDAS kids are going to fit neatly into the diagnostic box. For example, if you look at Dr. K.'s website, he says that PANDAS anorexia is normally due to fear of choking, not distorted body image (as in "regular" AN). Well, my dd had full-blown distorted body image with her PANDAS at age 7, no fear of choking.

 

Also, realize that Murphy is probably studying "typical" PANDAS kids that fit into a neat diagnostic box. She isn't studying the outliers, perhaps those like Peglem's dd who has an immune deficiency and was affected from a very early age, or kids that have PANDAS plus Lyme, or kids like Ellen's son that may have confounding infecttions (toxoplasmosis with it's link to Schizophrenia) that may be adding to the mix of problems.

[mkur]

As far as I know, there is zero cognitive decline in these girls. None. I would bet that the Cunningham test would be normal. Just my guess. But my theory is that out of control autoantibodies cause cognitive decline of some sort. Just like most autoimmune diseases with neuropsychiatric symptoms( ie. NMDA encephalitis).

 

My ds got sick when he was 7 in 1st grade and was tested yearly - no impairment. He did not have cognitive decline until end of 5th grade when he got sick again and lost major ground in 7th grade after another illness. He has not recovered. He is "classic pandas" and probably has a comorbid condition - still searching. I don't care what you call it - just fix it.

[PhillyPA]

This is what happens when I blow off yoga in the morning. I am checking the forums which I haven't done in ages.

 

I hear ya Mkur - who cares what you call it, just fix it. But the reason why we should WANT the pandas kids to fit neatly in the diagnostic box including a full remission is this - we want pandas accepted as a real disease with a real cure. When this happens, all of the kids who do not fit neatly in the box will be more likely to get help. If we try to fit everyone in the box and call it pandas the naysayers will have their say and it won't be pretty. So I say, put the pandas kids in a tight box and fix them. Then, fix us.

[tpotter]

EAMOM if the information your present is correct than I am more certain than ever that my son does not have pandas. No cognitive tests needed to be done to see that my son collapsed at age five. It was sudden and apparent when he could no longer talk. Although he meets all five criteria of Swedo's pandas diagnosis, I highly doubt it is pandas. If most pandas children do not experience a cognitive collapse than I am correct in my assessment that my son does not have pandas. My impression after reading Saving Sammy was that he was so overwhelmed with OCD he was barely functioning as a human being. In my memory of the book, he won that big math competition as he was on the road to recovery.

 

My son was perfectly healthy and normal up until age 5. He was not on the spectrum.

 

Do you mean he couldn't talk as in he developed Autistic symptoms? or he didn't have the intellect to talk? or something else?

 

Unfortunately, not all PANDAS kids are going to fit neatly into the diagnostic box. For example, if you look at Dr. K.'s website, he says that PANDAS anorexia is normally due to fear of choking, not distorted body image (as in "regular" AN). Well, my dd had full-blown distorted body image with her PANDAS at age 7, no fear of choking.

 

Also, realize that Murphy is probably studying "typical" PANDAS kids that fit into a neat diagnostic box. She isn't studying the outliers, perhaps those like Peglem's dd who has an immune deficiency and was affected from a very early age, or kids that have PANDAS plus Lyme, or kids like Ellen's son that may have confounding infecttions (toxoplasmosis with it's link to Schizophrenia) that may be adding to the mix of problems.

 

 

Keep in mind, too that researchers tend to use the samples that have the most chance of giving them the answers they are looking for. For instance, consider the IVIG study...between ages 4 - 12, sudden onset of OCD (tics won't be accepted, I presume,) and more specifics.

 

When DS was at his worst, had just been hospitalized for 4 days with suspected ARF, was having drop-falls, loss of speech, seizure-like episodes (with abnormal brain eeg's), severe loss of tone, anxiety and tics through the roof, we found Dr. Elia. We were excited, and sure we could get him into her "study" for PEX. After leading us on (we went in 3- 4 times, and then got no response after that), another dr. who we eventually found, explained that she was only going to take the kids who were the best fit (no outlier symptoms, current onset...he was 4 years s/p onset, but minimal to no tx). Her protocol called for OCD and/or tics. Although DS had severe OCD, we didn't know that's what it was, so we said he didn't have it. Her report said that he had "probable PANDAS", because he had rages, and all the other symptoms.

 

So, the fact that research shows certain things, doesn't mean as much to me, as what I keep hearing from all the parents on this forum. In the end, PhillyPA, do you think your child had something infection triggered or something else?

 

BTW, how is he doing?

[nicklemama]

I am beginning to wonder how many kids actually do fit neatly into the box. I see tons of examples of outliers. My own DS is an outlier of PANDAS, though he fits the new PANS criteria. He's never had a diagnosed case of strep, yet, he reacts to others w/ strep. He has no immune deficiencies. He is one of those who managed to go to school and do very well, even in the worst of times at home. I attribute this to the fact that he was very young (kindergarten at first exacerbation) so the expected behaviors were a pretty wide range then. He was also ahead of grade level academically, so if he did falter some, it was not obvious. He remains academically ahead. Will he always be? He is doing very well post IVIG. Yet, he is still lagging in some of his social behaviors. Its enough that it affects his "behavior" marks that come on his report card this yr, in 2nd grade. He's not terrible at school. He's actually very nice and cooperative but he doesn't always get along w/ others, when his ocd rears up. He's still a little immature for his age, socially.

 

Maybe there is something comorbid w/ your son going on. Maybe not. I'm not sure enough is even actually known about PANDAS to say anything is for certain.

[PhillyPA]

I don't believe in co-morbid. I guess I should never say never but that always seemed ridiculous to me. I mean, yes I believe that you can have something ADHD and pandas and Lyme. But I don't believe co-morbid conditions pop up over night without any warning unless it is something genetic (which in our case I know that it is not). Especially when all medical evidence says that there are no co-morbid medical conditions. I believe that something infectious happened to my son and that one infection did this all by itself. No "co" anything. Also, I know it is hard to read intentions in email so please know I am stating this matter of factly. No anger, or aggression or judgement. Just stating what I have pondered on the patio for many many months.

[nevergiveup]

Tpotter, how does this look like sc? No chorea? SC is chorea.

[dcmom]

Well we definitely saw some form of cognitive decline in my dd. I think it boiled down to short term memory issues (documented in pandas) + anxiety + frustration/ short fuse. Plus, at her worst point she was mildly spacey- like you would be when you have a cold- brain fog maybe?

 

This all went away immediately with pex.

 

For example- daughter was in kindergarten- first grade. All summer tried to get her to recite days of the week - no go. In school working on writing numbers 1-100- no go (some backwards, teens a mess, could not do it). Very resistant to practicing reading.

 

Literally the day after we came home from pex, she recited the days of the week like it was nothing, wrote from 1-100 perfectly, and read 6 books to my mom. It was a miracle!

 

(she was an atypically fast responder to pex- our doc said most do not get this quick of a response).

 

I am not sure if that is technically "cognitive decline"- but it sure has the appearance of it.

[LNN]

I don't believe in co-morbid. I guess I should never say never but that always seemed ridiculous to me. I mean, yes I believe that you can have something ADHD and pandas and Lyme. But I don't believe co-morbid conditions pop up over night without any warning unless it is something genetic (which in our case I know that it is not). Especially when all medical evidence says that there are no co-morbid medical conditions. I believe that something infectious happened to my son and that one infection did this all by itself. No "co" anything. Also, I know it is hard to read intentions in email so please know I am stating this matter of factly. No anger, or aggression or judgement. Just stating what I have pondered on the patio for many many months.

 

Philly,

I haven't followed this thread - must've made my ears ring when you used my name in your morning post. So I apologize for jumping into a topic I haven't taken the time to read. But your mention of cognitive issues, and how they don't fit into Pandas - plus your mentioning all that time sitting on patio for many many months...both hit home. I have done both. You could excavate old posts from '10 and find me in knots because my DS had cognitive issues no one else seemed to have (except for JAG, who threw me a private lifeline on this issue ).

 

I'm not here to make you believe in co-morbid. I can only tell you that for my DS, it's turning out to be layers. In hindsight, we've found that he had a zinc/B6 deficiency - either genetic, via poor diet, chronic illness - or who knows. That set him up for struggles with infections. Then undiagnosed lyme. Then strep/Pandas. Over 3+ years, we've unraveled many knots. We did many aggressive treatments. No need for gory details. Lots of symptoms responded. His cognition remained hindered. I told myself, others told me - "well, it takes time for the brain to heal." Time didn't heal. What did the trick for him was treating the nutritional deficiencies he had. - notably the zinc/B6 pyroluria.

 

When we started treating that last August, it was a "holy sh**" moment. Within a week, it was like watering a parched plant. He changed. He grew - physically and mentally. Within months, he blossomed. He caught up. For the first time ever - EVER - his teachers couldn't tell he was different. $35,000 in medical bills and 3 years and then... 4 silly pills, for $1.20/day, brought back the son I used to know as a toddler. Yes, we still do more than just this. There may be one last lyme battle ahead, he caught strep a month ago and had a mild flair. But it's an entirely different game now.

 

He doesn't fit into one box. He's not neatly Pandas nor neatly lyme. I can't tell people our story because it takes too friggin long and sounds just too nutty. But...he's better. This weekend, family saw him for the first time since last July. All they could say was "Who IS this kid???!!" My answers won't be your answers. But yes, I was 100% sure of a lot of things that turned out to be...not wrong, but incomplete. It's a journey. A very humbling journey. Hang in there.

[JAG10]

1330974171[/url]' post='133939']

1330971349[/url]' post='133931']

I don't believe in co-morbid. I guess I should never say never but that always seemed ridiculous to me. I mean, yes I believe that you can have something ADHD and pandas and Lyme. But I don't believe co-morbid conditions pop up over night without any warning unless it is something genetic (which in our case I know that it is not). Especially when all medical evidence says that there are no co-morbid medical conditions. I believe that something infectious happened to my son and that one infection did this all by itself. No "co" anything. Also, I know it is hard to read intentions in email so please know I am stating this matter of factly. No anger, or aggression or judgement. Just stating what I have pondered on the patio for many many months.

 

Philly,

I haven't followed this thread - must've made my ears ring when you used my name in your morning post. So I apologize for jumping into a topic I haven't taken the time to read. But your mention of cognitive issues, and how they don't fit into Pandas - plus your mentioning all that time sitting on patio for many many months...both hit home. I have done both. You could excavate old posts from '10 and find me in knots because my DS had cognitive issues no one else seemed to have (except for JAG, who threw me a private lifeline on this issue ).

 

I'm not here to make you believe in co-morbid. I can only tell you that for my DS, it's turning out to be layers. In hindsight, we've found that he had a zinc/B6 deficiency - either genetic, via poor diet, chronic illness - or who knows. That set him up for struggles with infections. Then undiagnosed lyme. Then strep/Pandas. Over 3+ years, we've unraveled many knots. We did many aggressive treatments. No need for gory details. Lots of symptoms responded. His cognition remained hindered. I told myself, others told me - "well, it takes time for the brain to heal." Time didn't heal. What did the trick for him was treating the nutritional deficiencies he had. - notably the zinc/B6 pyroluria.

 

When we started treating that last August, it was a "holy sh**" moment. Within a week, it was like watering a parched plant. He changed. He grew - physically and mentally. Within months, he blossomed. He caught up. For the first time ever - EVER - his teachers couldn't tell he was different. $35,000 in medical bills and 3 years and then... 4 silly pills, for $1.20/day, brought back the son I used to know as a toddler. Yes, we still do more than just this. There may be one last lyme battle ahead, he caught strep a month ago and had a mild flair. But it's an entirely different game now.

 

He doesn't fit into one box. He's not neatly Pandas nor neatly lyme. I can't tell people our story because it takes too friggin long and sounds just too nutty. But...he's better. This weekend, family saw him for the first time since last July. All they could say was "Who IS this kid???!!" My answers won't be your answers. But yes, I was 100% sure of a lot of things that turned out to be...not wrong, but incomplete. It's a journey. A very humbling journey. Hang in there.

 

I agree with both of you ladies. Prior to pandas dx, my dd12 was diagnosed with one psych dx on top of another followed by the stats of co-morbidity. Some of which made no sense to me at all, but you can back your way into many a diagnosis. I remember feeling dumbfounded my poor baby could be that unfortunate to have that many dxs.

I remember some wiser, more experienced parents advising me of the importance of time in the healing process. For some reason, my dd hovered around that 85-90% mark. There was something else there and for my girl it turned out to be intestinal yeast. Since that has been treated and since her last iVIG, she just keeps getting better. Before this was something that only happened with prednisone. Her cognitive clearing isn't as fast or immediate as it was with the steroids, but she is reaching that clarity without them and that is an amazing relief to us. Now we are at the point where "time" is working for her in a healing way.

ITND-infectious triggered neuropsychiatric decline; I think that would cover everybody.

[LNN]

Since that has been treated and since her last iVIG, she just keeps getting better. Before this was something that only happened with prednisone. Her cognitive clearing isn't as fast or immediate as it was with the steroids, but she is reaching that clarity without them and that is an amazing relief to us. Now we are at the point where "time" is working for her in a healing way.

ITND-infectious triggered neuropsychiatric decline; I think that would cover everybody.

 

Yes - that's it exactly! We have different insults to treat (pyroluria v. yeast) but the same result. It's a fragile recovery...but this time - for the first time - it feels sustainable and that we'll get it back if/when he hits blips. Because we (think/hope) we've found the underlying weak link in the armor. If we strengthen that, he becomes less vulnerable.

 

ITND-infectious triggered neuropsychiatric decline; I think that would cover everybody. - including us parents!

 

(BTW - working on a cookbook for 101 ways to eat crow - wanna help?)

[smartyjones]

(pyroluria v. yeast) but the same result. It's a fragile recovery...but this time - for the first time - it feels sustainable and that we'll get it back if/when he hits blips. Because we (think/hope) we've found the underlying weak link in the armor. If we strengthen that, he becomes less vulnerable.

 

LLM -- are you saying you think the pyroluria is the weak link? or are you not willing to make such a statement anymore -- is it just one and there is no THE?