Another curious observation

[Dr_Rosario_Trifiletti]

I have seen very very few African-Americans or native Africans with PANDAS.

 

I don't think this is merely a sampling or access issues, as I have spent a number of years in Newark, NJ, which is about 70% African American and saw only one case.

 

I'm wondering if there are any African-Americans on this board or if this might be a bonafide observation.

 

I'm thinking perhaps a tropical ancestry selects for an immune system particularly geared toward efficiently eliminating certain pathogens. I think most of you may be aware of the malaria-resistance conferred by SS-Sickle Cell disease.

 

Dr. T

[EAMom]

Hi Dr. T.

Have your seen this study from Hawaii?

http://qcbr.jabsom.hawaii.edu/QCBR/Turnerp...APedAd_2003.pdf

[momto2pandas]

I posted a question on this before asking if most people were of Mediterranean ancestry, and most were not, but many people got on to report about the ethnic mix of their kids. You could go back to that post to get a whole bunch of "data". I believe that the most common were central/northern European, with a dash of Mediterranean/middle-eastern (Italian, Jewish, Armenian).

 

 

I have seen very very few African-Americans or native Africans with PANDAS.

 

I don't think this is merely a sampling or access issues, as I have spent a number of years in Newark, NJ, which is about 70% African American and saw only one case.

 

I'm wondering if there are any African-Americans on this board or if this might be a bonafide observation.

 

I'm thinking perhaps a tropical ancestry selects for an immune system particularly geared toward efficiently eliminating certain pathogens. I think most of you may be aware of the malaria-resistance conferred by SS-Sickle Cell disease.

 

Dr. T

[Iowadawn]

LOTS of Denmark, and (Old eastern)Germany area ancestry in my ds.

[Suzan]

This topic is very interesting ot me, I posted a similar question as well within another topic about the african american population as I was noticing we seemed to be largely "white" population here.

 

My family is norwegian, scothish/irish/german. Pretty much a mish/mash otherwise but largely the northern and western european area to be very general about it with a bit of cherokee indian. Really we were Norwegian on one side and "pioneer stock" on the other.

 

susan

[thereishope]

I'm on many forums and groups and encounter a lot of people. Only once did I have an African American contact me about possible PANDAS. When I followed up with her she said her son received the dx of chorea and she dropped the PANDAS search. She was a parent whose child had strep then received the H1N1 vaccine then had tics and such.

 

A good person to contact would be Diana Pohlman. I doubt she asks people their ethnicity, but perhaps a few have offered this info to her.

 

What percentage of those afficted with OCD and TS are African American?

[Dr_Rosario_Trifiletti]

I'm on many forums and groups and encounter a lot of people. Only once did I have an African American contact me about possible PANDAS. When I followed up with her she said her son received the dx of chorea and she dropped the PANDAS search. She was a parent whose child had strep then received the H1N1 vaccine then had tics and such.

 

A good person to contact would be Diana Pohlman. I doubt she asks people their ethnicity, but perhaps a few have offered this info to her.

 

What percentage of those afficted with OCD and TS are African American?

My initial review of the literature suggests this is largely unknown. What a great PhD thesis project (projects) for the interested individual ...I would also think there is ready funding for this type of research.

 

An even bigger question: how big is this PANDAS problem, in general? Since this appears to be a common, and in some cases chronically disabling condition in many cases, the health/cost burden must be substantial. Just think of all the lost work hours and additional expenses parents incur in taking care of these children.

 

Dr. T

[Chemar]

What percentage of those afficted with OCD and TS are African American?

 

my son was born in Africa, and lived there till 2yo. I am South African (born to parents of European/British ancestry) and my husband is American (European Jewish Ancestry)

[reactive]

I'm on many forums and groups and encounter a lot of people. Only once did I have an African American contact me about possible PANDAS. When I followed up with her she said her son received the dx of chorea and she dropped the PANDAS search. She was a parent whose child had strep then received the H1N1 vaccine then had tics and such.

 

A good person to contact would be Diana Pohlman. I doubt she asks people their ethnicity, but perhaps a few have offered this info to her.

 

What percentage of those afficted with OCD and TS are African American?

My initial review of the literature suggests this is largely unknown. What a great PhD thesis project (projects) for the interested individual ...I would also think there is ready funding for this type of research.

 

An even bigger question: how big is this PANDAS problem, in general? Since this appears to be a common, and in some cases chronically disabling condition in many cases, the health/cost burden must be substantial. Just think of all the lost work hours and additional expenses parents incur in taking care of these children.

 

Dr. T

Understatement, Dr. T. My ds9 PANDAS has dealt with this for five years now. Our family has incurred several hardships and some of these are due to this disease...and my son is MILD (now) compared to others on this forum. He gets all A's except in math © and even played little league flag football and basketball this year...but he is constantly sick...misses school, always at the doctors, I've had him to the neurologist once, ENT once, allergist once and his family doc 3 times in the last month alone. All this while I try to accomodate 30 patients a day, and my husband is interviewing for a new position.

 

I always wonder why my son, while completely incapacitated for several weeks at age four, with a gradual improvement over the next few months, got back to functional level and other kids did not. He still deals with this when sick with strep, ect. but never to the severe nature as age four.

 

My side of the family: Welsh, Irish....my husband's side...German and French.

[momaine]

My children are English and Irish on their father's side and Canadian French on my side.

[momto2pandas]

I would be curious about represenation of non-white groups in other "unknown" diseases for which a lot of hunting on the internet, use of a lot of medical care to get answers, etc. is typical. It's possible that the distribution seen now is mostly a function of the early stage of disease recognition and of the quality of medical care received. Didn't that happen with anorexia nervosa - at first it was thought to be just a disease of the white and wealthy, and eventually it "expanded" into other groups? So much so that back in 1980, I was at first NOT given the diagnosis despite clear OCD-like weight loss of 40% of my body weight, because my family was not wealthy and we are Italian/Middle-Eastern rather than Anglo-Saxon - the pediatrician specifically said that my family didn't fit the socioeconomic and ethnic profile so it couldn't be anorexia nervosa. I remember even at the time thinking that that was remarkable.

In a similar vein, one can't help but note that the level of sophistication of people on the forums seems to be beyond the average. Could be that PANDAS is associated with e.g high IQ or highly educated families, or could be that high IQ/education families are the most of ones that have managed to navigate their ways to a PANDAS diagnosis!

 

 

 

I have seen very very few African-Americans or native Africans with PANDAS.

 

I don't think this is merely a sampling or access issues, as I have spent a number of years in Newark, NJ, which is about 70% African American and saw only one case.

 

I'm wondering if there are any African-Americans on this board or if this might be a bonafide observation.

 

I'm thinking perhaps a tropical ancestry selects for an immune system particularly geared toward efficiently eliminating certain pathogens. I think most of you may be aware of the malaria-resistance conferred by SS-Sickle Cell disease.

 

Dr. T

[Iowadawn]

The phenotype of the higher than average education/intelligence of the parents is noted by Dr. K on his website. My personal feeling is that this is due to the fact that people of higher intelligence/education are going to be more apt to keep searching/searching and end up finding themselves driving themselves or flying hundreds of miles to get to a doc. The financial well being of the family could be a factor seeking out or getting proper care. (And then the ones that do have a little extra end up spending it all- and then some- getting help!!) I so often wonder how many kids in families with humble means have children that end up "in trouble" because of a neuropsychiatric condition like PANDAS, let alone something a bit more understood. I don't know if I am making myself very clear. Any other comments. Dawn

[Kayanne]

The phenotype of the higher than average education/intelligence of the parents is noted by Dr. K on his website. My personal feeling is that this is due to the fact that people of higher intelligence/education are going to be more apt to keep searching/searching and end up finding themselves driving themselves or flying hundreds of miles to get to a doc. The financial well being of the family could be a factor seeking out or getting proper care. (And then the ones that do have a little extra end up spending it all- and then some- getting help!!) I so often wonder how many kids in families with humble means have children that end up "in trouble" because of a neuropsychiatric condition like PANDAS, let alone something a bit more understood. I don't know if I am making myself very clear. Any other comments. Dawn

 

I agree with you...we really don't know the true numbers of children afflicted with this...Another thing that Dr. K said in his radio interview on Autism One was that the mothers of PANDAS children have non-interfering obsessive tendencies...describes me to a T--although my DH doesn't think my obsessions are non-interfering...LOL...however, I think Dr K. has observerd this because it is this type of personality trait that is not going to let up until we find out what is wrong with our children!

[thereishope]

Well, we have "average" educations. We are not well off economically. As for intelligence...I like to think we are an intelligent family but not much to back that up

 

I think my driving force was the many hardships I've experienced in life, seeing patterns in them, and overcoing them. Some may think I'm silly for saying this, but hardships and triumphs often come in groups of 3's. Also, I know over time, life does tend to level out. Maybe you won't be exactly where you want to be but you eventually learn to get up, brush yourself off, go on, and find some type of closure.

 

I've also had to learn too many times "suck it up" and just fight.

[Dr_Rosario_Trifiletti]

The phenotype of the higher than average education/intelligence of the parents is noted by Dr. K on his website. My personal feeling is that this is due to the fact that people of higher intelligence/education are going to be more apt to keep searching/searching and end up finding themselves driving themselves or flying hundreds of miles to get to a doc. The financial well being of the family could be a factor seeking out or getting proper care. (And then the ones that do have a little extra end up spending it all- and then some- getting help!!) I so often wonder how many kids in families with humble means have children that end up "in trouble" because of a neuropsychiatric condition like PANDAS, let alone something a bit more understood. I don't know if I am making myself very clear. Any other comments. Dawn

I agree that most of the parents on this forum are of higher than average IQ, whatever their ethnicity. However, we also know that in general untreated streptococcal infections generally follows poverty. While I could see how milder cases of tics/ocd/behavioral changes could be under-reported, it's hard to believe that the severe quasi-psychotic cases could be missed. I think this may be the case as the few African-Americans I have seen with this have been very severe cases. The passing off of milder tics/ocd/behavioral changes as just things that "kids normally do" could have as much to do with cultural as with socio-economic factors.

 

This means that an important place to focus initial efforts of a "Got Strep" campaign could well be the inner city.

 

I am by no means a sociologist, I just raised this issue as it may be an important scientific clue in the etiology of PANDAS-like illness. Definitely something to consider discussing at the Autism One "think tank" session in May.

 

Dr. T