What do we & our PANDAS kids have in common?

[laurenjohnsonsmom]

I hope these aren't to personal questions to ask but almost all the doctors/specialists we have been working with have mentioned a pre-disposed/genetic link, possible to PANDAS. i.e.: family history of tics/ocd, etc.. A lot of parents have also told me that there child's sudden onset/manifestation was during or soon following what they thought was a cold/virus/flu, etc.. Finally, what do you do (did) for a living? I can't count how many parents have to me that they have some sort of engineering background.

 

So here it goes, for those willing to participate.

 

1.) Was your first (known manifestation a sudden onset?

 

2.) Was the initial onset during or following what you thought was a cold/virus/flu, etc?

 

3.) Is there family history of tics/ocd, etc?

 

4.) What is your (and/or your spouses) occupation?

 

5.) Do you have more than one child that you feel has PANDAS or has been diagnosed wit PANDAS?

 

Is there any other question I didn't ask that you think is common among PANDAS kids/parents/families?

[PKM]

I replied to the poll and checked off "other" for my husband's occupation. He is an accountant. I wonder if there is a possible "common" link there (almost similar to engineer really - good at math??) This is one that I do wonder about - my son is really good at math and always has been really good at math (he has been able to figure out rather complex mathematical ideas/concpets on his own since he was very small). Sammy was/is also very gifted in math. I wonder if others have noticed this in there PANDAS kids as well??

[thereishope]

I'll elaborate on some things...

 

I also have history of autoimmune issues in the family and, in particular, ones that relate to inflammation. One one family member I know of has a clinical OCD spectrum disorder, however, there are slight OCD tendencies I can see from many.

 

As for strep, I only have 1 known PANDAS child, but all 3 of my kids do not get symptoms of strep. I have since learned my cousin is/was a strep carrier. I had tonsilitis throught my childhood, got a lot better into adulthood.

 

The family OCD, autoimmune issues, and the strep carrier all come of mom's side of the family.

 

I am a stay at home mom, my husband job is similiar to that of a production artist (along the same line of a graphic artist).

 

Did you see the thread that was started regarding everyone's ethnic origin.

[familyof4]

Although I answered that my son had tics prior to PANDAS the sudden onset of his tics at age 4 was likely his first PANDAS episode that went undiagnosed.

 

1.) Was your first (known manifestation a sudden onset? YES

 

2.) Was the initial onset during or following what you thought was a cold/virus/flu, etc? NO

 

3.) Is there family history of tics/ocd, etc? NO

 

4.) What is your (and/or your spouses) occupation? My husband is a computer scientist and my degree is in Statistics and Math. My pediatrician thinks the only relationship between PANDAS and the occupations of the parents has to do with the fact that more educated people are not going to settle for a diagnosis of TS or OCD or Bipolar - they are going to seek out answers. She believes many more kids probably have this that have been diagnosed wrong but the parents just accept what the doctor tells them.

 

5.) Do you have more than one child that you feel has PANDAS or has been diagnosed wit PANDAS? No

[dcmom]

Family of 4 - I completely agree with your doctor's assertion that it takes educated, dedicated and most likely financially comfortable families (for the most part) to figure out this disorder. I agree that is why this apparent "phenotype". I think MANY kids go undiagnosed, or ocd, bipolar, etc. It also takes a lot of confidence as a parent to get help for mental illness in your family IMHO.

[laurenjohnsonsmom]

Hi Vickie,

 

I thought about adding the "auto-immune history" question, but I ran out of questions (only lets you ask up to three). I think that's an important piece to the puzzle. No auto-immune history in our familly but OCD tendencies run in mine, DH has very mild tics (he'a a Nucleur Engineer).

 

I also had many issues with my tonsils as a child (had them removed when I was 15)...hmmm interesting. I also recently read a post form a mom saying she tested positive for ANA titers. i did as well (homogeneous pattern which is suggestive of Lupus). This all fascinates me...

 

Thanks for letting me know your husbands "other" occupation. That's a hard one to cover in a poll question.

 

Did you ever check your family for aso titers?

 

Lynn

 

I'll elaborate on some things...

 

I also have history of autoimmune issues in the family and, in particular, ones that relate to inflammation. One one family member I know of has a clinical OCD spectrum disorder, however, there are slight OCD tendencies I can see from many.

 

As for strep, I only have 1 known PANDAS child, but all 3 of my kids do not get symptoms of strep. I have since learned my cousin is/was a strep carrier. I had tonsilitis throught my childhood, got a lot better into adulthood.

 

The family OCD, autoimmune issues, and the strep carrier all come of mom's side of the family.

 

I am a stay at home mom, my husband job is similiar to that of a production artist (along the same line of a graphic artist).

 

Did you see the thread that was started regarding everyone's ethnic origin.

[MomWithOCDSon]

1. Was our first known manifestation sudden onset? Looking back on it, yes, though we didn't realize it at the time.

 

2. Was the first onset on the heels of cold/virus/flu/etc.? Not that we can recall (have requested medical records dating back that far, but because our pediatrician changed practices, it's taking a while to get the earliest sets); what we do know is that he was constantly bringing home notices that a case of strep had been identified in his school, though he never demonstrated the typical symptoms of having caught it himself (he was asymptomatic). He'd just bring it home to me!

 

3. Is there a family history of tics/OCD? My husband has a mild case of OCD, and I would say that I do, as well, though I'm not certain that mine didn't become more noticable following my own bouts with strep throat.

 

4. What is your and your spouse's occupations? I'm a partner in a real estate consulting firm; my husband is an artist. Math did not come "naturally" to me, though it's become a big part of my everyday business life; hard learned, late bloomer, etc.! My husband, though an artist, is extremely analytically minded (he's a scientific illustrator), and math and science come naturally to him. Our DS12 is an absolute math whiz, always in advanced classes and frustrated by it only when he's required to "explain" his answer because he just "knows" most of the stuff, and trying to articulate HOW he knows it or why he solves a problem a certain way drives him crazy!

 

5. Do you have more than one child you think might be identified as having PANDAS? Nope.

[laurenjohnsonsmom]

Would the person who answered "attorney" PM me? I have a PANDAS/legal question to ask you....THANKS!

[laurenjohnsonsmom]

I think we all qualify as "researchers" by default!!

[thereishope]

I never had family aso titers checked. We have done strep tests for all family when my PANDAS son had strep and did follow ups to make sure it was erradicated. My son is doing well now, so I don't see if there's a reason to do it now. My older son was exposed to strep at school recently and he will be going to the dr today to make sure he didn't contract it.

 

Side note, lupus was one of the things they thought my mom had when they were trying to figure out what was wrong with her. She had complicated health problems that confused many on the Chicago med community. It ended up she had dermatomyositis. That led to ovarian cancer. She also had RA.

 

As a teen I had pseudotumor cerbri as a result of a sensitivity to tetracycline. That is rare too. It caused it to look like I had a brain tumor when it was a lot of inflammation on the optic nerve. That went away once I stopped meds.

 

 

 

 

Hi Vickie,

 

I thought about adding the "auto-immune history" question, but I ran out of questions (only lets you ask up to three). I think that's an important piece to the puzzle. No auto-immune history in our familly but OCD tendencies run in mine, DH has very mild tics (he'a a Nucleur Engineer).

 

I also had many issues with my tonsils as a child (had them removed when I was 15)...hmmm interesting. I also recently read a post form a mom saying she tested positive for ANA titers. i did as well (homogeneous pattern which is suggestive of Lupus). This all fascinates me...

 

Thanks for letting me know your husbands "other" occupation. That's a hard one to cover in a poll question.

 

Did you ever check your family for aso titers?

 

Lynn

 

I'll elaborate on some things...

 

I also have history of autoimmune issues in the family and, in particular, ones that relate to inflammation. One one family member I know of has a clinical OCD spectrum disorder, however, there are slight OCD tendencies I can see from many.

 

As for strep, I only have 1 known PANDAS child, but all 3 of my kids do not get symptoms of strep. I have since learned my cousin is/was a strep carrier. I had tonsilitis throught my childhood, got a lot better into adulthood.

 

The family OCD, autoimmune issues, and the strep carrier all come of mom's side of the family.

 

I am a stay at home mom, my husband job is similiar to that of a production artist (along the same line of a graphic artist).

 

Did you see the thread that was started regarding everyone's ethnic origin.

[Suzan]

I clicked other for my profession, I'm in Information Security.

 

Also, I clicked Never for any OCD or Tics before PANDAS but for us, there wasn't much "before" since my kids were babies before they started displaying their PANDAS symptoms when they were toddlers.

 

Also, I clicked no for history but I would say we have mild OCD in our family but nothing that would be considered a problem or even diagnosed.

 

Susan

[dut]

Altho I checked ocd for family history, the only ocd was my sister -in-law at a very young age... onset about 4/5 and lasted until teens.. It only came to light after my dd got her dx. My s-in-law sounds very pandas to me....

 

I bit my nails until I started thyroid supplementation a few years ago and we have a few worriers in the family but nothing vaguely close to clinical....

[Kayanne]

1. OCD tendancies on DH's side of the family--and a lot of anxiety....I answered both tics/OCD because we have come to believe that my husband has some very mild tics....just didn't know what they were prior to all of this. We are not seeking a diagnosis for his tics because they do not interfere with his daily life...right now it is just panic attacks and anxiety that are causing problems.

 

There is a history of autoimmune on both sides of the family. My maternal uncle and grandmother both had RF. I have obsessive tendancies with hobbies and things that interest me...so do my siblings.

 

2. I answered no, to OCD prior to PANDAS...but she was particular about some things....and I believe that there was an undiagnosed episode when she was about 3.5yrs. But I wouldn't have ever recognized it as OCD at the time...just thought she was "fussy."

 

3. My husband is a Land Surveyor....Engineering related.

[mama2alex]

I replied to the poll and checked off "other" for my husband's occupation. He is an accountant. I wonder if there is a possible "common" link there (almost similar to engineer really - good at math??) This is one that I do wonder about - my son is really good at math and always has been really good at math (he has been able to figure out rather complex mathematical ideas/concpets on his own since he was very small). Sammy was/is also very gifted in math. I wonder if others have noticed this in there PANDAS kids as well??

 

I also checked other for profession. My husband is in marketing and I was in PR/marketing before being a stay-at-home mom. I also wonder about the math connection. My son is very good at math and so is my brother who is in computer science. I have been suspicious that my brother may have had PANDAS as a child.

[laurenjohnsonsmom]

Would you consider "social anxiety/General anxiety/extreme shyness" OCD? Just a thought as I noticced only one person stated their child had OCD prior to PANDAS but my daughter has a definate history of social anxiety/shyness, Hmmm...