Another curious observation

[JAG10]

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!

 

DITTO!

 

Every intention at mass, candle I blow out, penny in a wishing well...

 

If I could spend 24 hours on an island with anyone dead or alive who would it be?

Without a moment of hesitation, the doc that can help my kid get and stay well.

[ajcire]

havioral 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.

 

 

 

As someone who taught in the innercity I would have to say that it would be very easy for many of the traits of pandas to be written off as a result of inner city socio-economic factors. I taught a special ed class filled with emotionally disturbed children and most definitely their issues were more attributed to their environment and they were not being looked at to see if there were any medical connections. It is really criminal to think how many kids are just written off there.

 

I HATE to suggest this as well but my guess is that if a parent in the inner city goes in with their child that often they are dismissed once again as just parenting issues. I know how easily I was first dismissed even by my doctor and told I just needed to use some tough love.

[Chemar]

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

 

I think many of the kids from lower socio-economic groups get "mental illness" diagnoses rather than further investigation. I think numerous "quasi psychotic" PANDAS cases are missed because they are simply lumped into the MI group

 

I was watching a documentary the other day about adopted kids with "mental illness". Many of them are not Caucasian. From the little I know of PANDAS and the lot I know of TS/OCD, it struck me that a number of those kids could be undx PANDAS/PITAND or Tourettic OCD. Breaks my heart to see kids drugged up on anti-psychotics and other strong meds, sent to rehab and psych wards simply because their well meaning parents have no idea of these other conditions, and as we all know, many doctors dont either

 

when my son first manifest some of the more troubling tourettic OCD symptoms, a psychiatrist told me he would likely have to be institutionalized

Thankfully I refused to accept that evaluation, and seeing my son now at 20yo doing so well, I have an even stronger concern for the many kids who are being misdx

[PatAnne]

This issue brings to mind the recent findings out of the MIND Instititute on autism prevelence in upper middle class communities in CA. Also the MUCH lower incidence in hispanic populations. This certainly questions the medical histories of both mother and child and exposures to many more vaccines and antibiotics as well as chemicals.

I've been struck over the years by how many kids I've met with Irish/English lineage with regresssive ASD's and PANDAS. I also wonder about the propensity for celiac disease and intestinal/BBB permeability in these groups.

We are mostly Irish with a *sprinkling* of Italian!

 

PatAnne

 

 

 

 

 

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

[thereishope]

Here is a thread by EAMom that includes an article about kids on Medicaid and psych drug prescriptions..

 

Thread...

http://www.latitudes.org/forums/index.php?...ic=6253&hl=

 

Article cited...

http://www.nytimes.com/2009/12/12/health/1...nted=1&_r=1

[P_Mom]

The inner city...I got chills...I am on my way. (husband in tow!..... )

[thereishope]

This thread included a poll of forum member's occupations...

 

http://www.latitudes.org/forums/index.php?...ic=6736&hl=

[jewels]

Just another interesting point that Fixit put into my head. This is our rate of TS

 

 

More than 300,000 people in the UK have TS, including one schoolchild in 100.

 

However, we have no data on PANDAS, and I am really finding it hard to complete the data on ASD reported cases as they are combining them with all sorts of other conditions that I'm not looking at.

 

 

Jules

[jewels]

Ignore all the spellig gramir mistakes - one is working tooo hard!

[reactive]

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

I agree with you completely. The clinic I work in is urban with mostly medicaid nonwhite patients. They live in the here and now. They will make an appointment for the same day for postpartum depression or infection or some other urgent need and not show up. Their ride will fall through. Their car will break down. They will get a lead on where to get food so they will delay their appointment in clinic to go to that. They also have poor problem solving skills and will be in the exam room with me and be upset they have to leave as the child they have with them has an appoinment in 10 minutes on the other side of the city. I know they will never make it and may get turned away...so they will leave and neither one of them may get seen.

 

When their kid does have a sore throat, many will go to the ER for most of their visits. This leads to poor follow up as if any OCD or tics that are mild are happening, it has the increased chance of getting missed due to different providers seeing the pt. There is not that consistent follow up in a chart like in a primary care setting.

[JAG10]

Just another interesting point that Fixit put into my head. This is our rate of TS

 

 

More than 300,000 people in the UK have TS, including one schoolchild in 100.

 

However, we have no data on PANDAS, and I am really finding it hard to complete the data on ASD reported cases as they are combining them with all sorts of other conditions that I'm not looking at.

 

 

Jules

 

Incidence rates vary to a great degree, from 1:100 to 1:1000. For what it's worth, I work in an elementary school of 400 K-4 students and we have 4 dx w/TS. A representative from TS Assoc is coming to speak with our 3rd and 4th grades this week. All four are white and male although white males only comprise 15% of the student body.

[reactive]

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

 

I think many of the kids from lower socio-economic groups get "mental illness" diagnoses rather than further investigation. I think numerous "quasi psychotic" PANDAS cases are missed because they are simply lumped into the MI group

 

I was watching a documentary the other day about adopted kids with "mental illness". Many of them are not Caucasian. From the little I know of PANDAS and the lot I know of TS/OCD, it struck me that a number of those kids could be undx PANDAS/PITAND or Tourettic OCD. Breaks my heart to see kids drugged up on anti-psychotics and other strong meds, sent to rehab and psych wards simply because their well meaning parents have no idea of these other conditions, and as we all know, many doctors dont either

 

when my son first manifest some of the more troubling tourettic OCD symptoms, a psychiatrist told me he would likely have to be institutionalized

Thankfully I refused to accept that evaluation, and seeing my son now at 20yo doing so well, I have an even stronger concern for the many kids who are being misdx

Chemar:

 

Did/does your son have PANDAS?

[thereishope]

In the beginning of the school year (before new evals and screenings were done) 15 out of approximately 85 kindergarten student had an IEP! That means they were identified PRIOR to kindergarten. I don't know the number now that any screenings on other kids have probably been done that were not part of the Early Childhood Program. They said it was the highest number they ever had at the start of kindergarten.

[Chemar]

Did/does your son have PANDAS?

 

 

Hi

 

not that we are aware of, tho I have always suspected a PITAND aspect to his Tourette Syndrome

He does also have Crohn's Disease, which some docs think is related to mycoplasma. We know he once had Epstein Barr tho never mono.

 

he is now a 20yo and doing just great. some mild tics, rare OCD and when it shows, not intrusive or scary like it used to be when it could "morph" with the tics and result in either psychotic behavior or unintentional self injury. Now it is more mild precision/organizing OCD, which he releases via his music and artistic stuff.

He still has diet/supplements(nutritional, herbal and natural antimicrobials & probiotics) and things like acupuncture as his primary healthcare.

 

I did have him under the care of Dr Murphy and one of her associates for many months, but they did not feel he was PANDAS based on the testing they did then, and him having absolutely no history of strep. I took him because of his sudden onset of the severe TS/OCD when I first learned of PANDAS in 2000/2001 while frantically researching what may be happening to him.

 

In our journey, we realized that my husband and his own dad, and possibly in retrospect memory of some of my cousin's and uncles, had symptoms of Tourette Syndrome. We are pretty certain we are dealing with genetic TS, but as I mentioned above, there is also the PITAND component. We feel possibly the natural antimicrobials he has been on for many years keep that aspect under control

[reactive]

Did/does your son have PANDAS?

 

 

Hi

 

not that we are aware of, tho I have always suspected a PITAND aspect to his Tourette Syndrome

He does also have Crohn's Disease, which some docs think is related to mycoplasma. We know he once had Epstein Barr tho never mono.

 

he is now a 20yo and doing just great. some mild tics, rare OCD and when it shows, not intrusive or scary like it used to be when it could "morph" with the tics and result in either psychotic behavior or unintentional self injury. Now it is more mild precision/organizing OCD, which he releases via his music and artistic stuff.

He still has diet/supplements(nutritional, herbal and natural antimicrobials & probiotics) and things like acupuncture as his primary healthcare.

 

I did have him under the care of Dr Murphy and one of her associates for many months, but they did not feel he was PANDAS based on the testing they did then, and him having absolutely no history of strep. I took him because of his sudden onset of the severe TS/OCD when I first learned of PANDAS in 2000/2001 while frantically researching what may be happening to him.

 

In our journey, we realized that my husband and his own dad, and possibly in retrospect memory of some of my cousin's and uncles, had symptoms of Tourette Syndrome. We are pretty certain we are dealing with genetic TS, but as I mentioned above, there is also the PITAND component. We feel possibly the natural antimicrobials he has been on for many years keep that aspect under control

Interesting...my son has mostly tics presently so your case is interesting to me...but at age four he was symptoms of classic PANDAS even with joint and leg pain...a psych in Pittsburgh called it PANDAS without the strep component as we could not find the strep at that time; fastforward to age 5 and 6 and recurrent strep...tonsils out age 6...now age 9 doing really good but increase in tics/OCD when sick. He looked at me yesterday at lunch and said "I can feel the PANDAS getting better" and he is on day 3 of a z-pack....he can tell when it gets worse and better.