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for further understanding? Phenotype stuff


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Sorry if it's a bit personal but you have to just wonder some times...

 

I am an RN and have been in nursing for 20 years (and of course had never heard of pandas prior to this whole deal) but I keep wondering how many others (of you guys) are nurses and others in the medical fields or in research or otherwise ... any other highly enterprising individuals among us? You guys seem wicked smart or otherwise successful. The reason I ask is because I believe somewhere on Dr. K's web page I saw something about the phenotype for these kids as such. And a few recent posts got me thinking...

 

Another question... now after knowing very well what OCD looks like, I am starting to see sub clinical, low level OCD tendency in both my husband and myself. We like CERTAIN things 'just right'. It's not anything that bothers us and we NEVER noticed until the full blown OCD my dd had with her pandas episodes....but still...we notice it now. Does anyone one else notice that (pandas parents)?

 

Regards,

amy s

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On the OCD tendencies, I think perhaps you're just more aware of OCD now. But also, I think its normal for people to have some things that they are overly picky about. If your wanting things "just so" generates alot of anxiety or interferes with functioning then it could be considered pathological. But, otherwise, just quirky. For instance, I have this thing about making sure the eggs left in the carton are arranged symetrically and centered (so the carton doesn't tip and maybe fall when its picked up). But, I don't spend much time thinking about it and I don't get upset if the arrangement isn't possible or if somebody leaves it asymetrical. (I do notice, though, and fix it)

 

I'm not sure I understand your question about phenotypes.

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Hi, Amy:

 

Wow - there are a lot of nurses, psychologists, and healthcare pros on this forum! Makes me feel ignorant, because neither I nor my wife have any medical background (other than researching and reading like maniacs since this nightmare started). :lol:

 

Anyway, I know what you mean about Dr. K's "phenotype" for PANDAS kids. Looks like he's rearranged his web site a bit, but here's the link to that section:

 

http://www.webpediatrics.com/pandasclinica...Anchor-(5-28203

 

This was one of the things that struck home for me when I first found Dr. K's web site. His description of typical PANDAS symptoms and of the classic phenotype matched our situation perfectly. My wife is a former software engineer, so she fits the "mother of a child with PANDAS is highly intelligent, has a history of being good in math and with computers (computer-savvy)" bullet like a glove. From what I've seen on this forum, seems like many moms are in the medical profession, highly educated, and very, very smart!

 

I don't know if my wife or I have any serious OCD tendencies - certainly nothing major - but I recall having some pretty bad perfectionism and major anxiety as a kid. I also happen to have an autoimmune disorder (Crohn's disease). I figure my son's vulnerability to PANDAS was probably inherited from my side of the family.

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Yes, I have also noticed many intelligent parents on this board. My under Graduate is in Education and my Graduate in Library Information technology. So I do enjoy research and it has come in handy in my situation. Luckily I am able to stay at home now and devote my time to my family. My husband is a computer finance IT guy. He has his Masters in Business. He has anxiety issues and social anxiety and depression. I like things very neat and clean. I am not obsessive but organized. My husband and I both bite the inside of our mouths from nerves. My grandma 97 has always washed her hands over and over and had many worries about kids getting hurt. My husband's family has to have things just perfect and also have social anxiety issues. My mom smells her fingers sometimes and is very particular about things. I have some polyarthritis and inflammation that is most likely autoimmune related. I am sure the family anxiety and autoimmune have contributed to his PANDAS.

 

My

Sorry if it's a bit personal but you have to just wonder some times...

 

I am an RN and have been in nursing for 20 years (and of course had never heard of pandas prior to this whole deal) but I keep wondering how many others (of you guys) are nurses and others in the medical fields or in research or otherwise ... any other highly enterprising individuals among us? You guys seem wicked smart or otherwise successful. The reason I ask is because I believe somewhere on Dr. K's web page I saw something about the phenotype for these kids as such. And a few recent posts got me thinking...

 

Another question... now after knowing very well what OCD looks like, I am starting to see sub clinical, low level OCD tendency in both my husband and myself. We like CERTAIN things 'just right'. It's not anything that bothers us and we NEVER noticed until the full blown OCD my dd had with her pandas episodes....but still...we notice it now. Does anyone one else notice that (pandas parents)?

 

Regards,

amy s

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Hi Amy,

I'm with you - I've thought about these questions a great deal over the past months. I like to think I'm smart ;-), but I've often wondered if the reason Dr. K sees these smart moms and dads is because it's not easy finding out about PANDAS. I'd certainly never heard of it before my daughter got sick, my doctors had barely heard of it and never discussed it with us, so if I hadn't been spending hours, days, weeks sifting through research I can barely understand on the internet I still wouldn't know what was wrong with my daughter. I think a parent without internet access and time to research and network would be extremely lucky to find out about PANDAS.

 

There is a lot of anxiety, perfectionism and neat freaks in my family tree. But I have to say, never in my known family history has a child exploded with the symptoms like my daughter did when sick - not even close. Our family is has an extremely high occurance of autoimmune diseases.

-Peggy

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Peggy, that's a really good point about perhaps just the parents making it to him are the ones with the access to the research. It really makes sense. I really believe there are a lot more children out there with this than anyone knows. I have a feeling it's not nearly as rare as people think. Maybe some have more subtle symptoms, some are probably being written off as difficult children, and others as children with a tic disorder or just some ocd.

 

I too like to think I am really intelligent but I don't know if we fit the phenotype. My dh does.. he is a CPA, very mathematical but so not into organization, being on a schedule or time, or things like that. I am a special ed teacher... math was actually always one of my weaker areas, English, written language is my strong point.

 

 

 

Hi Amy,

I'm with you - I've thought about these questions a great deal over the past months. I like to think I'm smart ;-), but I've often wondered if the reason Dr. K sees these smart moms and dads is because it's not easy finding out about PANDAS. I'd certainly never heard of it before my daughter got sick, my doctors had barely heard of it and never discussed it with us, so if I hadn't been spending hours, days, weeks sifting through research I can barely understand on the internet I still wouldn't know what was wrong with my daughter. I think a parent without internet access and time to research and network would be extremely lucky to find out about PANDAS.

 

There is a lot of anxiety, perfectionism and neat freaks in my family tree. But I have to say, never in my known family history has a child exploded with the symptoms like my daughter did when sick - not even close. Our family is has an extremely high occurance of autoimmune diseases.

-Peggy

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I really believe there are a lot more children out there with this than anyone knows. I have a feeling it's not nearly as rare as people think. Maybe some have more subtle symptoms, some are probably being written off as difficult children, and others as children with a tic disorder or just some ocd.

 

Erica240 - i believe it may be more common too.. I've posted this before but... when our dd started with this I contacted family to see if these behaviours were just something we did in our families (before I found out about PANDAS). My mother-in -law was an elementary teacher and principal in UK for 20 years. She had a small school in Northern England. She said said that each year from a reception class of 28-30 children, ages 4-5, they would see 2 or so children each year with sudden onset of OCD. Germ fears and handwashing, mostly boys, sometimes with ADHD type behaviours. It would usually last no longer than 6 months, sometimes the ADHD behaviours would remain. She can't remember any more details... it was a while ago!

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I am a Pediatric Nurse Practitioner -- I had heard vaguely of PANDAS in grad school and must have filed it deep in my brain somewhere-- because the day my son got sick and we brought him to the ER I was sure they would do a throat culture-- they didn't but I was so overwhelmed and scared that I just sat back and let the psychiatry ( resident) talk me into believing that this was a psychiatric episode ( even though he had a sore throat at the time). I could kick myself.

I thank god that I had the ability to question providers at every turn and access the right people and it has been tough!!!

I still feel like my sons doctors are not on the same page-- disagreement about the benefit of tonsillectomy/ disagreement about the antibiotics... but he is on prophylactic antibiotics and s/p tonsillectomy and except for a recent tic has been doing really well so I watch and wait and keep praying it stays at bay.

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I agree with Peggysue...I think it is the educated, intelligent, willing to research parents that are making it to Dr. K. These parents probably also need a certain amount of financial resources to be able to travel and pay out of pocket for IVIG. I would suspect that lots of other kids are getting PANDAS but not being diagnosed/treated appropriately.

 

The parents without the resources to do their own research, or the ability to question the average doc (who don't know about much PANDAS) will likely just accept the first diagnosis they get..."your child is bipolar" or "your parenting is bad" or "your child has tourettes" and "PANDAS doesn't exist."

 

IMO you need to be a little pushy and have good analytical skills (do your own research) to get a PANDAS child treated appropriately.

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  • 1 month later...

Yes, and Yes to answer your question. I am a doctor and I think my OCD tendencies are what got me through medical school. I always make sure I dot every "i" and cross every "t"! I also chuckled when I read Dr. K's website because the mom he was describing was me!

Claire (mommd)

Sorry if it's a bit personal but you have to just wonder some times...

 

I am an RN and have been in nursing for 20 years (and of course had never heard of pandas prior to this whole deal) but I keep wondering how many others (of you guys) are nurses and others in the medical fields or in research or otherwise ... any other highly enterprising individuals among us? You guys seem wicked smart or otherwise successful. The reason I ask is because I believe somewhere on Dr. K's web page I saw something about the phenotype for these kids as such. And a few recent posts got me thinking...

 

Another question... now after knowing very well what OCD looks like, I am starting to see sub clinical, low level OCD tendency in both my husband and myself. We like CERTAIN things 'just right'. It's not anything that bothers us and we NEVER noticed until the full blown OCD my dd had with her pandas episodes....but still...we notice it now. Does anyone one else notice that (pandas parents)?

 

Regards,

amy s

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I grew up plagued by irrational feelings of overwhelming guilt and became a writer to cope with the intense psychological pain.

 

I am also pretty tidy!

 

My pandas son has had two full IQ tests (because of behavioral problems) and is profoundly gifted, so I was also very very interested when I read Dr. K's phenotype stuff.

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Amy,

 

I have always noticed that most say that their children are of high intelligence. The physician that saw my son also said this is a common trait. When my son was first diagnosed with ocd (not PANDAS), his then pediatrician told me that most physicians are ocd. That's what makes them good, the attention to detail. It's being able to keep it under control that is the hard part. I think my husband definitely has some ocd tendencies. He is an attorney and to say he is detail oriented is putting it mildly. I am also an RN. I think the previous poster was right though in that the biggest difference is that we don't "come apart" when our ocd issues don't go just right. It is all a matter of degree. I think there is most certainly a common thread among many of our families and children. Very interesting.

 

Dedee

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We also fit the phenotype here...OCD runs in my family...my mother was the incessent germaphobe and hand washer...I am a highly organized perfectionist with a freakishly good memory. I learned to use my OCDish behaviors to my advantage in work and now running my business...my mother is much closer to disorder status than I am...but I also learned coping mechanisms to keep mine in check...autoimmune disease is also in my family...my mother and brother both are diagnosed with reumatoid arthritis...I don't show any symptoms so have not been tested...doesn't mean I won't get it eventually...but my son is the first person in my family to display tics...his OCDishness...is symmetry.

 

My son is also very good at mathematics...he refuses to show his work and does it all in his head...even adding three digit numbers... (he's 8)...I have a degree in English and although I am very good at advanced mathematical concepts...I will add or subtract simple numbers incorrectly...when his tics were at their worst...I did notice he was making silly mistakes in his arithmatic...

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Yes, similar issues in our family re: phenotype.

Definite OCDish tendencies in the family, though never diagnosed officially, but apparent.

 

Lisa --your post reminded me that my own mother was diagnosed with rheumatoid arthritis, interesting.

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I'm a little late responding to the phenotype questions...sorry. I'm a probation officer, I'm not in the medical field. But I'm known for my investigative skills, great with numbers and computers. The first time I read Dr K's description of the PANDAS childs mother, I couldn't believe it, that was me to a T. I'm called anal all the time, don't have OCD, but ocd characteristics (and I like them), my mother is worse than I am and there is some mental health issues up my mother's side of the family. I know the strep suceptablility runs from my mother's side of the family as well...

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