If you look back at your childhood?

[Broo100]

I think that my brother, growing up in Europe, had PANDAS. He was an organizational mess, anxious, ADD, lost everything and had tics (motor and vocals) that came and went. Once, his hair even started to fall out. My parents, were so relaxed about everything and thought it was all a phase. Everything resolved sometime in college and now he is a very successful businessman (engineer). My ds, 11, reminds me a lot of him except that when he got his flare, it was more intense than I remember my brother's being. Do you think that you or someone closely related to you had PANDA/PANDAS growing up? Did this person grow out of it? Would your say that your dc's is "stronger"? I am very curious and thinking that this is a situation that could b outgrown (like my brother's) gives me hope. Thoughts?

[MomWithOCDSon]

Yes! I suspect I had PANDAS. My sister was constantly coming down with strep, but I never caught it . . . at least, not in the classical sense. I had a physical constitution of iron, i.e., was always hyper-immune.

 

But emotionally/behaviorally, I was a handful. They didn't have/use the term back then, but I would certainly would have been classified as ODD today. Major temper tantrums, inflexibility, high anxiety, etc. My folks, too, were disinclined to take any of my "symptoms" too seriously . . . I was just a "brat." But like my DS, I performed at a high level academically and could be very "together" when I was engaged in something I enjoyed.

 

My symptomology resolved slowly throughout the years, predominantly when I went to college but certainly improved in the years even after that. I got my first ever classic case of strep throat as an adult, at the age of 38+ when DS brought it home from school the first time. It was very intense and painful, and frankly a shock since I'd been impervious to it as a kid.

 

My DS's Life Altering Exacerbation was certainly much worse than anything I'd thrown at my parents in my prepubescent or pubescent years . . . I think. But then again, I'm sure I have something of a warped perspective. It's hard to be objective. But objectively I know I was never entirely nonfunctional: unable to go to school, unable to eat, or bathe, or dress, etc. My DS was, however, for a period of time, at the height of his illness.

 

Like everything else, I think this monster is a combination of genetic susceptibility and "trigger": infection, autoimmune dysfunction, etc.

[Broo100]

I too wonder if I have a warped memory. I mean, if my kids' hair started falling out in clumps I am certain I would panic in many ways but since my parents were so laissez faire it does not seem like such a big deal in retrospect. I also have to add that my own mother had her tonsils out when she was young because she kept getting strep and that I, who never got strep as a child, have gotten then nonstop ever since having children. It finally stopped when all 3 of my kids got their tonsils out.

[airial95]

I absolutely had it as a child. Chronic strep (6-8x per year) - I would get sick with it though. Was hospitalized in Jr. High because I had strep for over 2 months and nothing was clearing it - had to go on IV abx (it was there that a random nurse asked my mother if my sister ever got checked - sure enough, she was a carrier!!!). I had what chronic UTI's (or at least that's what the dr thought at the time), and would have to go to the bathroom constantly. Again, in Jr. High I was put through a horrible battery of kidney and bladder tests trying to find out why I was getting so many UTI's - it's no surprise now that they came back clear of anything (obviously wasn't UTI's but actually PANDAS).

 

Personality wise, I was always a high achiever academically, with very little effort, so a lot of my personality "quirks" (as everyone called them) were tolerated/overlooked back then. But as a younger child, I had to sleep with EVERY SINGLE stuffed toy I owned (and there were a lot), and both parents had to tuck each one in by name, and if they messed up - the whole process had to start over again. (And if one fell out of bed in the middle of the night - the whole house had to be woken up to get everyone tucked back in.) My parents thought it was cute, and a phase (my sister who shared a room with me at the time did NOT!!)

I had sensory issues, particularly with getting my face wet and when through long periods where I would only wear certain clothes - things I see very clearly in my son now. As I got older, I would make "nests" in my room/closet out of clothes where I felt comfortable. I would spend hours reading in my nests - something my parents thought was odd, but since I was reading, they didn't care much. I see the same things with my son now as well, he has his "safe corners" where he likes to go when anxious, my daughter does this as well.

 

I would sneak into my parents bed to sleep well into my early teens, and once I stopped doing that, there would be nights where I wouldn't sleep at all.

 

{Edited to add: I also suffered from school refusal so badly that I actually switched schools 4 times in 5 years - my parents thought I was "bored" because I was so smart and wasn't being challenged enough, but looking back and knowing what PANDAS is, I can see it is so much more. }

 

In high school, I started to have some mild social anxiety - but I was good at covering it up. I was considered "popular" by most standards, but had very few close or "real" friends. I tended to be a "clique" on my own that could float easily to all of the different social circles. As a result, I only have one friend that I still communicate with regularly from high school - and we didn't even become close until after graduation. I did all sorts of strange things in high school to cover up my anxieties - carried a lunch box 24/7, had a small Elmo doll that went with me to classes who I "consulted" with when asked a question. My entire Jr. year in high school I carried a boquet of plastic daisies everywhere I went asking people to "smell my daisies" - when asked why? I would respond "because it made you smile". (Which was true). Again, it was tolerated by the school because I was top of the class, so they didn't care, my friends and peers just thought I was being "funny" and "wacky". Full disclosure - I started smoking pot A LOT in high school, and it really did help me function on a daily basis.

 

In college, I got strep a couple of times, and I had a episode of blackouts my freshman year. I lost about 3 days of my life, and just remember waking up in a hospital because my roommates/friends became suspicious of my erratic behavior (apparently I was awake and functional, but have no memory of what I said or did over that time). After a week in the hospital with no clue as to what was happening, my advisor and parents decided it would be best for me to come home for a couple of weeks, which I did.

 

I have not tested + for strep since my hospitalization freshman year. Knowing what I know about PANDAS now, there's no doubt I had it (our PANDAS experts agree), however, I don't think I do anymore. I notice no issues when I am sick or have any sort of infection - viral or bacterial. I have Anklyosing Spondylitis (an autoimmune joint disease) that requires me to be on drugs that lower my immune system - so I have gotten sick ALOT with no issues.

 

So have I outgrown it? Yes - technically.

 

Were there any lasting effects? Absolutely. I have also been clinically diagnosed as OCD as an adult. It does not truly interfere with my daily life, but it is noticeable. The way my house is cleaned is on specific example, and if I have not been able to perform my cleaning rituals regularly, my physical and emotional anxiety levels visibly increase. (It's the one compulsion my husband tolerates unconditionally - his theory is if we have kids who react badly to getting sick, there are worse things to have than a mother who insists on bleaching down everything in the house weekly!!!)

 

Would I have had OCD as an adult if I didn't have PANDAS as a kid? Who knows, I was always treated for strep, so I can't say that my PANDAS went completely untreated, but I was always only treated for the current infection, not what we would do for PANDAS. But I suspect that my OCD might not be so bad if we had known about and treated PANDAS as a kid, or if my parents would have noticed that my "quirks" weren't just phases and were signs of a bigger problem.

 

My OCD is the reason that I insist on CBT for my kids now in addition to the medical interventions. Teaching them how to cope and survive - even if the OCD comes and goes - is what I wish I would've had growing up if we had known.

Edited January 21, 2014 by airial95

[ibcdbwc]

Interesting question. With DS, his presentation is/was more severe than anything I can remember in my family history. Nor do I hear dramatic stories regarding DH's history. But there are hints and touches of every symptom on both sides.

 

I had sensory issues and an eating disorder. I also had strep repeatedly until my tonsils were removed at age 18. My brother had eye tics and both my siblings "tested the patience" of my parents. DH is a rigid thinker and one could argue OCPD (personality disorder - not OCD). His sister has OCD tendencies but they do not interfere with daily life. Both are intense people, and have tripped over into anxiety from time to time. But they are were rule followers and highly successful students.

 

No question DS's baseline personality (intense yet also sensitive) is inherited! However, the wild change in him during a flare is not like anything from our pasts. On the other hand, we tend to only remember the good moments in great detail. The bad ones, get a bit of whitewash effect over time.

 

I try and tell myself that its rather important to adopt a semi "laissez fare" attitude. I know our entire family is adversely affected when molehills become mountains. That being said, the crisis flares are dramatic and worth the attention!

[pr40]

airial95 -- thanks for posting your history. it is very informative. I wish we had such material pinned.

 

in my wife's family, we see more PANDAS symptoms but they are scattered. like every sybling has one.

based on my experience, seeing my wife reach her late 40ties, I have to ask if there is another priviledged age for PANDAS, namely, around menopause?

As the immune system changes, it would stand to reason that symptoms can reappear.

Edited January 21, 2014 by pr40

[Missmom]

Ha ha.... Pr40.. That would be MANDAS

[NancyD]

My brother, now 58, was dx with Sydenham's Chorea as a very young child and was put on penicillin for a long period of time. I remember he had one or two tics. We had an incredible pediatrician who was researching strep back then. My brother has been healthy ever since -- with no residual problems.

[qannie47]

Nice wishful thinking pr40.....I think my husband would have spiked my coffee every morning with abx during my early menopause..... Ha

 

I think my sister in law had Pandas as a child. She is now 65. She is now schizophrenic. The family never believed in going to the doctor. So, I could see a Strep infection never being diagnosed or treated. The limited info that my mother in law will share describes a child who had tics and over the top fears. Dr. K in our initial interview, and not knowing anything about my family stated that "anybody that developed Pandas over 20 years ago it could be a tragedy. I believe that it can lead to schizophrenia, etc...". I immediately thought of my sister in law.

 

I also think each case is unique as well. A spectrum. Some might just grow out of it with no intervention if they have few episodes. Others might not if they never have abx to treat infections.

Edited January 22, 2014 by qannie47

[airial95]

I do think that I was "lucky" in the respect that I at least did get sore throats and fevers with my strep, so my mom always got me in to the doctor and I never really had an untreated strep infection. But Dr. K is right, it was well over 20 years ago that I had these issues, and no one put two and two together. I also think it was a different time parenting wise as well. (My mother from Spain was told not to speak to us in Spanish as children because we would turn out "slow" - a lot has changed!!!).

 

I should note, that it took almost 2 years into our journey before we even put 2 and 2 together that I likely had PANDAS. I knew my chronic strep history was relevant, but like someone else mentioned, I think we tend to "whitewash" our childhood traumas and issues sometimes - making them out to be funny, or less relevant than they were. It started to become clear to me when I would vent to my mother and more often than not she would respond with "you used to do that all the time" and run into a story of things that I did that sounded awfully familiar. And even after Dr. B and M confirmed that I likely had it based on history alone, I still didn't connect the UTI's and kidney concerns until much later. The more I look back, the more clear the picture becomes.

 

The reason I don't hesitate to share my personal story is this: If I could come out of it on the other side with little/no intervention for PANDAS and be a well adjusted, functional, happy, even if slightly OCD, adult who looks back on my childhood with just as happy memories and fondness as anyone else - then our kids who we are fighting for have an even better shot at getting there some day.

 

We keep CBT going because I firmly believe that if I had that, my OCD may not be with me today. But we also focus on giving our kids as "normal" of a childhood as possible, we let them go to birthday parties, sleepovers, play sports, etc... Are we terrified of them getting sick? Absolutely. Do we take extra precautions? Totally. But we try to let them live every day of their life as if PANDAS is a small part of it for them, like a kid who has braces or wears glasses. Its part of them, but we don't let it define them. I had a happy childhood because no one knew differently, I know if my mom had any clue about PANDAS, she would've wrapped me in a protective bubble, and I wouldn't be the person I am today. It's hard for me to find that balance, but I keep saying, if I survived okay, so can my kids.

[ibcdbwc]

My aunt was schizophrenic. Mild tics as a child and sometimes "stubborn" by everyone's memory but overall a successful woman until age 24. We know that mental illness has biologic roots. I suspect many "adult disorders" stem from a similar PANDAS type pathway. As Dr. T said to me once, "people don't just go crazy for no reason."

Edited January 22, 2014 by ibcdbwc

[SSS]

No, there is no history of PANS, strep infections, or mental illness on either side of our families.

I believe my unknown and untreated Bartonella infection caused me past anxiety emotions in my adult life.

I have 2 other healthy, completely neuro- typical children,

so it's hard for me to get behind a genetic component in my dd's neuro issues/ illness.

What does seem clear now, looking back,

she was born with infections,

and then had aggressive and excessive CDC vaccination scheduled shots

and her immune system came undone,

during formative years in childhood.

[airial95]

sss - there are two distinct theories on PANDAS/PANS - one is obviously genetic. Dr. M has published research noting as high as a 60% incidence in siblings where there is family history of chronic strep or autoimmune disease (we fall into that category). But there is also another school of thought that indicates it may be a particular strain of strep/infection that causes the dysfunction - which explains why you see outbursts like what was seen in Leroy not too long ago, as well as similar outburst in CT and the Carolinas in recent history (all of those were attributed to "mass hysteria" - but likely actually caused by an infection).

 

Both theories are widely supported. My personal thought is that the cases where there is no other underlying immune problems (either genetic or injury caused) and are likely caused by a particularly nasty strain are often the cases where you may see a child recovered quickly, and never have another episode, and the genetic/vaccine injured cases are the ones that become chronic. But that is just my completely uneducated theory on the matter from all of the discussions I've had with our specialists over the years.

 

(Full disclosure, we have no reason to believe in our case that vaccines had anything to do with our kids PANDAS onset - all genetic here.)

[ibcdbwc]

My guess? Both theories are correct. I think there must be a genetic component that leaves a person susceptible. So when exposed to certain conditions, the susceptible individual becomes affected. We have one son with PANDAS and one without. Are they genetically different or were they exposed to different conditions? Probably both.

[airial95]

Most experts also subscribe to both theories - that's why I didn't want to say they were "competing" exactly. The fact that there is a strong documented genetic connection only can explain about half of it. It can't explain the clusters that they find from time to time.