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How many parents think THEY had PANDAS?


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I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why.

 

As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test.

 

I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems.

 

Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis.

 

It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

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I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why.

 

As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test.

 

I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems.

 

Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis.

 

It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

 

I really think I have it. I have autoimmune issues. Thyroiditis and anti cardiolipin antibody. I had anorexia in high school, all of a sudden. Most people blamed that on my father's death, but it is a symptom of PANDAS and OCD too. Have lots of anxiety, heights especially. I too had chronic strep as a child and had my tonsils and adenoids out at 6. I also had strep with pregnancies, and I need to ask my GYN which pregnancies. Never positive strep throat test as an adult.

Brooke

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I haven't seriously wondered about myself (although lately I've been so stressed my eyes have been blinking involuntarily on occasion), but I have wondered about my brother. He's had diagnoses ranging from ADD, anxiety with OCD tendencies, depression, panic and social phobia. I know first-hand that he had rages when he was growing up, and at 13 he turned to alcohol and drugs. He doesn't know when his anxiety started (he doesn't remember not having it), but I think the ADD was diagnosed pretty early, maybe 2nd or 3rd grade?

 

He got into AA in his early 20's and is much better, but still struggles with anxiety/OCD. Interestingly, he also has very frequent illnesses, and I am trying to convince him to see an immunologist.

 

I don't know if he had strep as a child (he's 6 years older), but I should ask him.

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Interesting,... but first, I think my opinion, and just mine, is that PANDAS may sort of be more of a "21st century illness'. By this I mean that, perhaps the premise was around when we were kids, but I think, just like autism, it has vamped up due to those things that have obviously changed or evolved since the last 50 or so years, changes such as more processed foods, more genetically modiefied foods, pecticide useage, chemicals used in cleaning products in the home, environmental changes, VACCINE sched, etc. Perhaps a mutation over time of the type of bacteria strains that are involved here. the fact that some are resistant to certain antibiotics, why do some respond to one antibiotic and not another. all these things are variables that may have somehow created this new epidemic. I think some of us may have had tics or ocd or other behaviors on some level, but not sure if it was the full out PANDAS that we are seeing now. not sure, but I think if it was, it would have been sort of looked at as something back then. nowadays, we have autism, and it is in the forefront because there are so many cases, that we have no choice. when we were kids, did you know even ONE autistic child? now, I bet each of us personally knows at least 3 or 4. I mean every school district has whole special education classes just for autisim. my point being that 'something in the air' has increased these spectrum disorders. they may hve been around, but on a much leser level, or at least less common.

 

That said, I think I have had some transient tics as a child that were of no issue, I don't even think my parents realized it, but I recall some things, but no vocal or eye blinking. Vickie, I'm laughing, cause I do remember some temper tantrumy behavior on my part too.. :wub: .. . I did hve sore throats, but I remember at the time, we were always treated with the antibiotic erythromycin, it was popular at tthe time. we always had it in my house, and I recall the pharmicist would give us refills even when it said no refills left. so don't know there....

 

so again, I maintain that the premise of PANDAS was probaby present, and some of us may have had the predisposition to it and certainly some of the symptoms, but the assaults from the last 50 years or so have certainly contributed it to be more of a full blown disorder.

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I like the way you worded this...

 

so again, I maintain that the premise of PANDAS was probaby present, and some of us may have had the predisposition to it and certainly some of the symptoms, but the assaults from the last 50 years or so have certainly contributed it to be more of a full blown disorder.
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I had a conversation with another mom several months ago. I was getting some flack about how much time I spent on the computer. I told her that she just didn't understand what it was like to have a child (children) where you were constantly worried about their health. She replied, "yes I do. I used to pray beside my daughter's bed after she went to sleep, her anxiety was awful for me too."

 

I know this child had repeated strep (tonsils out around 5 or 6) slept in her sisters room, because she could not sleep alone in her room for anything, vomited before school until 3rd grade, bedwetter. No tics, ocd, or adhd tho. Very compliant, although suffered greatly when her parents went out for an evening. I would say ANXIETY was a constant companion in early years.

 

It really didn't occur to me until my mom made that statement, that I too was probably somewhat of a PANDAS child.

 

I was never really able to shake the "abrupt onset," idea until very recently.

 

BTW faith, well said!

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I've always assumed I have TS.......the earliest symptoms I remember go back to when i was 9 or 10 probably. Growing up, I was always told to "stop that" b/c everyone assumed the tics were just bad habits. Of course all that ridicule led embarassment and i never discussed it w/ anyone, not even drs until recently.

Anyway, when I first heard of PANDAS, it never crossed my mind that that could be why I tic. I was mostly checking into PANDAS for my dd.

Now though, i do wonder........i don't remember having strep, but i do remember having sore throats. Could i jsut have had asymptomatic strep like many kids here do? As far as OCD, i think it was there (and still is) just not nearly as extreme as some cases we read about here. I remember one of my "habits" was to say the F word immediately followed by the SH word.......BUT, i would ONLY say this around my sis and one particular friend. Why is that?? If it were actually coprolalia, as in TS, why wouldn't I say it in all situations, no matter where i was or who i was with? My Mom says she does NOT remember me ever shouting that out at home. so that makes me wonder if it was more OCD "making" me say that.......i dunno.....OCD and tics....there is such a fine line sometimes.

Another thing that makes me wonder is why haven't my symptoms gotten any better into adulthood......like TS is *supposed* to do? Could it be that I have a BBB breach and everything gets by? then again my recent CamKinase score was 100. Have any other adults here had the test run on themselves?

other things i remember from childhood that could be related is temper tantrums (well i dont' really remember, just stories i've heard about how I'd throw the worst fits......lucky me, there is even photo evidence of one of those :wub:

There was a period of time where I'd have really weird, frightening dreams.....i could never recall what was scary about them but i know i'd wake up freaking out. I do recall there was sounds.......like first there'd be an eerily silence and then sooo suddenly an ear shattering LOUD sound. even thinking about that now gives me chills. i could never explain those dreams to anyonne, even now it's probably hard to understand. I dont' know how long those went on for.

I talked in my sleep alot too......and once or twice sleptwalked.

I'd have some occasional bedwetting but nothing that was a problem.

I'd sure be curious to know what some of the PANDAS experts opinions are on this. Does anyone know if there is ANY research out there?? I wonder if i'd be able to convince any dr to do a trial of high dose abx on me?

Oh one more thing maybe worth mentioning.......my Dad......who i don't ever remember having strange behaviors; well he now has a vocal tic, which i'd say i've only noticed in the last 10 years or so. i dont' have any memories of him doing that when i lived at home. He has a whole host of other health problems too. i have a sis who had some "habits" as a kid (smelling books.....but i did that too....we BOTH still do that one) and she admits to having some OCD thoughts dealing with numbers now. My brother on the other hand doesn't seem to have anything related to these disorders.

sorry this post is all over the place.....i should've organized my thoughts better. In my defense it's VERY late and I'm exhausted!

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powerofprayer,

 

I just have to ask you something. Having been around these bds for quite some time now, it seems that some of the older people report onset around the age of 10. It has crossed my mind many times that they used to give the 2nd MMR around the age of 10, I believe. Do you happen to have any vaccine record? Just really curious about that. I don't know if they gave any other vaccines at the same time or not. Those old schedules are hard to find on the net

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I haven't had my CamKinase score checked. I don't think I ever will. But sleep walking, talking in sleep, and night terrors run in my family. As for an age, I don't remember. I don't remember much from my very early childhood so I would take a guess I was at least a little older. In hindsight, by my mid teens a lot got better.

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Kim,

I did check my own vaccine record and I had a Rubella vax in 1982, i would've been 11 and a half at the time. I THINK my symptoms started before that. I guess at that time the combo MMR wasn't given. It showed i had the measles vax at around one year of age and that's it. No mumps vaxes at all. That one rubella shot in 82 was the only one recorded other than my infant shots and sometihng around 5 yo, i think it was a DTP booster.

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PoewrofPrayer,

 

Thanks for looking that up. It's just strange how that seems to come up quite often (later onset in previous generation).

 

Here are the dates those vaccines became available.

 

 

1963 – Measles vaccine

1967 – Mumps vaccine

1969- Rubella vaccine

1971 – Measles, mumps and rubella vaccines combined to form MMR

 

looks like the recommendation for a 2nd dose of the MMR wasn't made until 1989.

 

Can you imagine getting a shingle vaccine, a TdaP, Hep A, a 2nd dose of measles, a seasonal flu, and an H1N1 all on the same day now, or even in the same month? I would be absolutely scared to death for my own health not to mention the vaccines with mercury and aluminum+ all of those antigens that my boys got. It seems downright bizarre to me now.

 

I don't have a copy of my vax record. I remember getting them though. I know the DTP's had mercury in them.

 

I grew up living next door to my beloved granny. She had two little blue bottles of this stuff that burned like #### fire on cuts and even canker sores. I remember the names on those two little bottles... merthiolate and mercurichome. I had lots of skinned elbows and knee and remember getting that stuff put on my cuts often enough.

 

http://en.wikipedia.org/wiki/Thiomersal

 

Thiomersal (INN) (C9H9HgNaO2S), or sodium ethylmercurithiosalicylate, commonly known in the United States as thimerosal, is an organomercury compound (approximately 49% mercury by weight) used as an antiseptic and antifungal agent.

 

It was invented and patented by Morris Kharasch. The pharmaceutical corporation Eli Lilly and Company gave it the trade name Merthiolate and it has been used as a preservative in vaccines, immunoglobulin preparations, skin test antigens, antivenins, ophthalmic and nasal products, and tattoo inks. The compound is being phased out from routine childhood vaccines in the United States, the European Union, and a few other countries.[1]

 

http://en.wikipedia.org/wiki/Merbromin

Merbromin (marketed as Mercurochrome, Merbromine, Sodium mercurescein, Asceptichrome, Supercrome, Brocasept and Cinfacromin) is a topical antiseptic used for minor cuts and scrapes. Merbromin is an organomercuric disodium salt compound and a fluorescein. It is readily available in most countries but no longer sold in the United States because of its mercury content.

 

I have always reacted to metals too. Could never even wear eye shadow with sparkles.

 

How'd I get off on all of this???

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  • 1 month later...
I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why.

 

As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test.

 

I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems.

 

Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis.

 

It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

 

I know this is an older post but as I was scanning the board I came across it. I am new here and posted for the first time just the other day about my daughter she is 19 and I posted to Dr. T's request as to how many had the high levels of Mycoplasma pneumoniae on the blood test. My daughter did not show levels of strep but as I said in the post the Mycoplasma pneumoniae were high. Ever since we started researching this some time in early December I have wondered if I too had suffered from this. I am well now..but at age 23 I "came down with" bad anxiety. I have had strep twice in my life that I know of, once some where around age 19 or so (If I knew I would need this info down the road I would have tried harder to remember) but to the best of my knowledge it was around 19 remember having to get a shot of penicillin, I don't remember much more about it. I do remember the day the anxiety came on, it is clear and as I said I was 23. I suffered with it for years always trying to figure out what was happening, doctors, therapist, priest, I finally ended up agoraphobic not quiet housebound but it took everything I had to go to a job and hold down everyday life. I suffered for about 8 years when I ended up at a Naturopathic doctor, I had food allergies, amino acid levels that were all over the place. I eliminated the foods that were not good for me including anything with gluten, turns out that was a big one. I had supplemental amino acids to get my levels back in check and really began to feel better. So good that I got pregnant, had a great pregnancy and then seemed to need another round with the amino acids after my daughter was born. I was ok after she was born but teetered some days with the anxiety that seemed to come and go but never as bad as it was...I was tested for candida (yeast) and had high level of that. Took nystatin for awhile and felt much much better again. I have had step once again after all this when my daughter was around 7 or 8 it was June which I think is an odd time for it. No one around me had it but I was pretty sick with it. Received amoxcilin for it and felt better right away. Right before I was pregnant I was looking into why my teeth were moving out of place, dentist did not think I had gum disease. Became pregnant shortly after that and did not go back to the dentist for work until after my daughter was born...where i was told I had very bad periodontal disease. I should mention that before this from around age 20 I had a bad tooth that my dentist did not realize for quite awhile that I needed a root canal...I had antibotics over and over again whenever that flared and it flared often. I ended up with antibiotics when surgery was done for the periodontal disease and that is now under control, been 18 years of care but my gums are in good health now. I mention the tooth/gum issues because it is all inflamation and wonder are all these things tied together. And I also wonder if the amount of antibiotics I have had because of the teeth/gum issues if that helped me along with elimination of the foods/gluten and the amino acids. My mother just the other day told me that my dad when he was young around 15 or 16 years old she remembers going to visit him one summer when he had to stay in bed the whole summer, she said she thinks it was rheumatic fever she said they were young and no one ever really said what it was he had. He died at age 52 from heart disease and also had periodontal disease that the dentist at first said he did not have. I just wonder with it all. Now my daughter with what she is dealing with. Quick story for her it came on during high school, had presented with lots of gi symptoms for a couple of years and then exposed by boyfriend to strep and within a few weeks "came down with" anxiety, couldn't attend school and or be separated from us etc. I just wonder. Sorry this is so long but I feel like if there are people out there putting the puzzle together the more info the have the better. thanks.

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I would put down money my husband is the 60's version of PANDAS. He and his 2 brothers traded around repeated cases of strep throat in middle school and says that, shortly thereafter, his own anxiety issues kicked in. Currently, he has a mild but clinical case of OCD himself and remains very "sensorily sensitive" with respect to clothing, environment, etc.

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I got the same strain of strep that my girls had when they got this mess when they were toddlers. I swear that strain messed me up too. I am so sensitive to sound now and have a few more sensory issues than I had before and I do have mild OCD. I always thought it was from having 2 kids constantly around me but now I wonder....

 

Also, I went through a period of time after that where I was in constant fear of everyone dying or being stolen. I thought it was post traumatic stress disorder from my son dying. But maybe it was the strep.

 

I had my tonsils out when I was 5 from constant strep. But my mom says I never showed any signs of anything that seems like pandas.

 

Susan

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