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Do you ever wonder if you have it too?


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OK, now I'm starting to wonder about myself. When DS was diagnosed with OCD I looked at my husband and myself and our families and it was obvious that we both had some OCDish behaviors ourselves. I figured he inherited from us. Now that we are looking at PANDAS I've wondered how our behaviors fit in. Did we predispose him to PANDAS? Or could I possibly have it as well?

 

I had tons of ear infections as a toddler and strep quite a bit as a child myself. Other than that I was almost never sick except for a bad virus in my teens (probably EBV) and a horrible sinus infection at 20. I almost never got colds until college.

 

Anyway, I remember about a year or so ago I would realize I was piano playing with my fingers whenever I felt stressed or was deep in thought. It was just on my right hand, like i was doing a quick piano trill. DS had started doing this and I assumed I had just sort of picked it up from him. It went away after a few weeks once I became conscious of it. Maybe we were both reacting to strep at the time?

 

As a kid I couldn't manage to sit on a seat without falling off. My parents were very kind and used to just laugh when I would wiggle myself off the chair at dinner. Now I wonder if I was having choreoform movements.

 

My mom told me when she was a kid she would put her hand out the car window and pretend to jump the telephone poles with her hand. One day she realized she felt like she HAD to do it. She decided to stop and did, though she says she STILL has the urge sometimes.

 

I went through a period at around 20 years old after a bad breakup with my long time boyfriend. I was a part-time receptionist and my job was extremely boring and I was alone in the office a lot. I would feel every single hair on my head and pull out the ones that didn't feel smooth enough. I did this for a few weeks. One day I looked down at my desk and saw this huge pile of hair and realized I was going to be bald if I didn't stop. I also thought how weird it would look if my boss were to come in and see a huge pile of hair on my desk. It was really hard but I didn't do it anymore. Even now when I'm stressed I realize I am feeling around in my hair. When I find a courser one I still have the urge to pull it, but I won't let myself.

 

And the skin picking. I've been a skin picker since Jr. High. My mom used to pick at our skin as well. It's worse when I'm stressed. It's like I go into a trance and pick away. Mostly it is at blackheads on my face, which come out and don't leave a mark. I do tend to pick pick pick at bumps on my arms though until they scab. Thankfully I don't usually have a lot of bumps on my arms! And if I've picked something to a scab, it is almost impossible for me to leave it alone. Lately I've been very judicious with the Neosporin because it helps things heal so much quicker. I've been pretty lucky in the scarring department. If I see a blemish popping up it is about all I can do to leave it alone. I've noticed that a bad day with my son ends up with me sitting on the bathroom counter picking at my face for an hour. We lived in a house that had no counterspace in the bathrooms, just sinks, and I did much better there. A big countertop just calls me to climb on up, sit down and pick awhile. The bathroom at my parents house is especially luring for me. My husband hates it. He has made me promise to never pick at our son's faces. Now that DS is getting a few blackheads, it's hard. But since I know he has OCD, I would hate to cause him to start picking too.

 

DH is a nail biter/picker. He bites and picks at his nails until they bleed. They always look so sore and red. And of course it is worse under stress. DS was doing this during his last exacerbation but has since stopped.

 

For awhile in college I was a compulsive list maker. Thankfully my family always just joked about "Gina's lists" and were amazed that I would just tell them to throw them away when they found them. They weren't actually about recording things I guess, more a need to get thoughts down. One day I realized I was using the lists to fool myself into believing I was doing something, when in actuality most things never made it past the list. I made a vow to not make lists and to simplify my life to the point that I could remember all the the things I had to do in my head. I went years without making lists. As a parent and homemaker I definitely have to make lists now, but I've made computerized ones so I don't need to do it very often, lessening the urge to start up again. I get the urge when I read books that have a lot of good information in them. I always thought that this was an attempt to get past my ADD. Now I realize it has components of both disorders.

 

As teenagers, my friends and I used to touch the ceiling whenever we went over railroad tracks and say the name of the boy we had a crush on. Kind of a magic spell to make him like us I guess. I kept doing this even after I was married. Then I had to add the name of my first son. After I had my second son and realized I was muttering these names like something bad would happen to them if I didn't say ALL of them, I quit. Mostly I don't even think about it anymore, but sometimes I do and remind myself it is silly and move on. My PANDAS son does something similar by making sure he says the name of everyone in the family when he gives his good night "I love you"s. Including the cat and dog. Or if he says he loves the dog, he has to tell me he also loved the dogs we've had before that have died. I remind him that a feeling is in his heart whether he says it or not and he doesn't have to list them all out. Nothing bad will happen and it doesn't mean he doesn't feel the love. He's beginning to see that and understand it.

 

There is definitely a habit/comforting component to it all. Especially the skin picking. In one of those strange, twisted ways, it was a bonding time with my mom. I must get some oxytocin boost or something when I do it. These things are very soothing and satisfying and seem to be "fixing" something. Sort of like meditation because my mind just lets the thoughts come and go and I feel very relaxed when I'm done. It wasn't until I realized that they really didn't actually fix anything that I have managed to kick most of them. Apparently, these kinds of behaviors need to be tackled with Habit Reversal therapy. Here is a link I found that explains it. http://www.acne.org/habit-reversal.html. ERP works well too.

 

I haven't kept track enough to know if they are linked to illnesses or get worse when my son's symptoms get worse as well. I'm definitely going to start taking note. Anyway, I wonder if any of the rest of you notice PANDAS like behaviors in yourself?

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Hi - I have been very much like you with the picking and also nail biting for me. The nail biting and urge to bite completely disappeared 5 days into treatment for low thyroid. But also I've read a lot about n- acteyl-l-cysteine recently and it's use for trichotillomania.

 

Here's a copy of my post in response to JAG10 about similar propblems

 

- skin picking and nail biting and hair pulling (trichotillomania) are all different faces of a similar aspect of OCD. The following articles look at the use of n-acetyl-l-cysteine for hair pulling and may be worth considering...

 

http://ihealthbulletin.com/blog/2009/07/06...ichotillomania/

 

 

http://news.bbc.co.uk/2/hi/health/8132387.stm

 

My PANDAS dd6 and possible PANDAS ds2 both had a flu-like illness last November which sparked what would have been a bad episode, I believe, if we hadn't halted it with steroids. Both kids started biting their nails the following week. Neither had been biters before. Within a week my ds had stopped but my dd continues. No other symptoms remained. (although we have since seen a ramp this last week ...)

 

Anyway.. when we had her thyroid checked last year she was ok. When checked after the ramp following the flu, she had low Free T3. We need to discuss giving her thyroid meds with her dr. Be interesting to see that if we do go that route if her biting stops.

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Yes...jmho...i think once we get pit/pans going it will be realized, that heredity all part of this, not just the the odd case with no other family members

why for years will only one kid get ocd or ts in a family with none....his combination of genes and enviro created a new state for him/her....i wonder if that will be a new hereditary state to pass on....

or more families are more predisposed than others

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I asked this question awhile ago on here. It makes you wonder, doesn't it?

 

As for me...tonsilitis over and over as a child. The dr just gave penicillin right away w/o strep tests. I had some OCD as a child. I still can see some tendencies in myself. I had rages as a child. Sensory issues (sounds of lights in the stores drove me crazy, couldn't go to the movies). Other problems too. Autoimmune disorders, strep carriers, and OCD runs on my mother's side. I even look at how PANDAS kids are smart, good memories, etc. I am not saying I am super smart, but I do notice I have a very good memory that my husband hates:) Now that my child has PANDAS, I try to notice if I become more anxious, or freak out easier when someone is sick. But how can I tell? I mean, I'm a stay at home Mom. When someone is sick, obviously my stress will increase, but I think I do have a harder time sometimes at controlling it.

 

Makes me wonder....

Edited by Vickie
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After putting all this stuff together...I'm almost positive my older sister has it. Joint pains for years, autoimmune issues nobody can quite diagnosis (not lupus, but not anything else), behavior issues over the past few years during huge periods of stress. I think it has even been proven that she is myc. pneum. carrier. It is just a matter of time before they come up with the adult version, and hopefully, the adults won't have as long to wait as our kids!! And I have been paying close attention to myself too, trying to piece together memories, not sure...the jury is still out.

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I have to say it's werid that I logged on and saw this because my mother literally just asked me this question. She was just asking if it's possible that it's way broader than it appears and if it isn't possibly genetic for dh or I.

 

Not to the same extremes but I do have done a lot of those things... nailbiting, list making but getting nowhere past making the list, thinking things like if it takes less than XX steps to get there than XX will happen (Not sure if this wasn't just my silly way of wishing for good things though and being superstitious about it)...

 

but I can tell you that it is almost encouraging to me to think that maybe some of us do have it because we are functioning members of society, with families, relationships, friends, happiness....without interventions...

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Why grandparent and not parent?

 

 

I was just reading an article on PANDAS and it stated kids might have a predisposition from a grandparent having Rheumatic Fever. I think Dr. T. or someone on this board asked this ? a while ago. My dad had RF and my mom had scarlet fever. I had a little OCD growing up, but seemed to have outgrown most of it.
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We too have a history of strep-related, autoimmune diseases in the family :-(

DS9 - PANDAS. Scarlet fever twice.

I am pretty sure, I had PANDAS as a child. 7 years old first exacerbation, following a strep throat : Sniffing tics, nail biting, frequent urination, mild OCD. 16 years old following pneumonia : Anorexia Nervosa, OCD. 40 years old diagnosed with Multiphasic EncephaloMyelitis due to strep (+ Cunningham Test), with MSlike neurological symptoms. No psychological symptoms. Scarlet fever.

Grandmother : Reumatic fever and kidney removed (Glomerulonephritis) (strep). Depression and OCD - but only in the wintertime !! Scarlet fever.

 

Coincidence ?

Edited by PANDAS_Denmark
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I'll try to make this short, I have posted some of the same information on earlier post. I think I too am(was) PANDAS. I had bad tooth infections (eventually root canal) that went on for about a year, treated with antibiotics each time before they realized what was happening. that was around age 19/20, also had strep I think around age 19 and impetigo around age 18.

 

I had severe anxiety onset overnight at age 19/20. I had a few OCD things I now realize. I don't remember being sick before hand but very possible, too many years have passed. (the strep episode I don't remember being close to the onset of anxiety) One day happy kid, next day a mess and it continued for 8 years (ended up agoraphobic) Many things I think helped me to end the anxiety, food allergy avoidence, amino acids, treatment for yeast.

 

Small relaspe with the anxiety after my daughter was born (nothing like it had been and I kept functioning) we did the treatment for the yeast at that point. Also found out though too that I was stage 4 gum disease while pregnant with my daughter, of course had antibiotics to treat infections along with surgery about a year after she was born. The antibiotics were on and off for about a year as they did each quad on my mouth.

 

My daughter (19) now has PANDAS and presents with separation anxiety and ocd, with anxiety being the bigger problem.

 

My dad we think had rheumatic fever when he was around 15/16 years of age (he passed of heart disease at 52)

 

Do I think there are connections? Yes, I think some day we will see the dots connected.

 

 

OK, now I'm starting to wonder about myself. When DS was diagnosed with OCD I looked at my husband and myself and our families and it was obvious that we both had some OCDish behaviors ourselves. I figured he inherited from us. Now that we are looking at PANDAS I've wondered how our behaviors fit in. Did we predispose him to PANDAS? Or could I possibly have it as well?

 

I had tons of ear infections as a toddler and strep quite a bit as a child myself. Other than that I was almost never sick except for a bad virus in my teens (probably EBV) and a horrible sinus infection at 20. I almost never got colds until college.

 

Anyway, I remember about a year or so ago I would realize I was piano playing with my fingers whenever I felt stressed or was deep in thought. It was just on my right hand, like i was doing a quick piano trill. DS had started doing this and I assumed I had just sort of picked it up from him. It went away after a few weeks once I became conscious of it. Maybe we were both reacting to strep at the time?

 

As a kid I couldn't manage to sit on a seat without falling off. My parents were very kind and used to just laugh when I would wiggle myself off the chair at dinner. Now I wonder if I was having choreoform movements.

 

My mom told me when she was a kid she would put her hand out the car window and pretend to jump the telephone poles with her hand. One day she realized she felt like she HAD to do it. She decided to stop and did, though she says she STILL has the urge sometimes.

 

I went through a period at around 20 years old after a bad breakup with my long time boyfriend. I was a part-time receptionist and my job was extremely boring and I was alone in the office a lot. I would feel every single hair on my head and pull out the ones that didn't feel smooth enough. I did this for a few weeks. One day I looked down at my desk and saw this huge pile of hair and realized I was going to be bald if I didn't stop. I also thought how weird it would look if my boss were to come in and see a huge pile of hair on my desk. It was really hard but I didn't do it anymore. Even now when I'm stressed I realize I am feeling around in my hair. When I find a courser one I still have the urge to pull it, but I won't let myself.

 

And the skin picking. I've been a skin picker since Jr. High. My mom used to pick at our skin as well. It's worse when I'm stressed. It's like I go into a trance and pick away. Mostly it is at blackheads on my face, which come out and don't leave a mark. I do tend to pick pick pick at bumps on my arms though until they scab. Thankfully I don't usually have a lot of bumps on my arms! And if I've picked something to a scab, it is almost impossible for me to leave it alone. Lately I've been very judicious with the Neosporin because it helps things heal so much quicker. I've been pretty lucky in the scarring department. If I see a blemish popping up it is about all I can do to leave it alone. I've noticed that a bad day with my son ends up with me sitting on the bathroom counter picking at my face for an hour. We lived in a house that had no counterspace in the bathrooms, just sinks, and I did much better there. A big countertop just calls me to climb on up, sit down and pick awhile. The bathroom at my parents house is especially luring for me. My husband hates it. He has made me promise to never pick at our son's faces. Now that DS is getting a few blackheads, it's hard. But since I know he has OCD, I would hate to cause him to start picking too.

 

DH is a nail biter/picker. He bites and picks at his nails until they bleed. They always look so sore and red. And of course it is worse under stress. DS was doing this during his last exacerbation but has since stopped.

 

For awhile in college I was a compulsive list maker. Thankfully my family always just joked about "Gina's lists" and were amazed that I would just tell them to throw them away when they found them. They weren't actually about recording things I guess, more a need to get thoughts down. One day I realized I was using the lists to fool myself into believing I was doing something, when in actuality most things never made it past the list. I made a vow to not make lists and to simplify my life to the point that I could remember all the the things I had to do in my head. I went years without making lists. As a parent and homemaker I definitely have to make lists now, but I've made computerized ones so I don't need to do it very often, lessening the urge to start up again. I get the urge when I read books that have a lot of good information in them. I always thought that this was an attempt to get past my ADD. Now I realize it has components of both disorders.

 

As teenagers, my friends and I used to touch the ceiling whenever we went over railroad tracks and say the name of the boy we had a crush on. Kind of a magic spell to make him like us I guess. I kept doing this even after I was married. Then I had to add the name of my first son. After I had my second son and realized I was muttering these names like something bad would happen to them if I didn't say ALL of them, I quit. Mostly I don't even think about it anymore, but sometimes I do and remind myself it is silly and move on. My PANDAS son does something similar by making sure he says the name of everyone in the family when he gives his good night "I love you"s. Including the cat and dog. Or if he says he loves the dog, he has to tell me he also loved the dogs we've had before that have died. I remind him that a feeling is in his heart whether he says it or not and he doesn't have to list them all out. Nothing bad will happen and it doesn't mean he doesn't feel the love. He's beginning to see that and understand it.

 

There is definitely a habit/comforting component to it all. Especially the skin picking. In one of those strange, twisted ways, it was a bonding time with my mom. I must get some oxytocin boost or something when I do it. These things are very soothing and satisfying and seem to be "fixing" something. Sort of like meditation because my mind just lets the thoughts come and go and I feel very relaxed when I'm done. It wasn't until I realized that they really didn't actually fix anything that I have managed to kick most of them. Apparently, these kinds of behaviors need to be tackled with Habit Reversal therapy. Here is a link I found that explains it. http://www.acne.org/habit-reversal.html. ERP works well too.

 

I haven't kept track enough to know if they are linked to illnesses or get worse when my son's symptoms get worse as well. I'm definitely going to start taking note. Anyway, I wonder if any of the rest of you notice PANDAS like behaviors in yourself?

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I have to say it's werid that I logged on and saw this because my mother literally just asked me this question. She was just asking if it's possible that it's way broader than it appears and if it isn't possibly genetic for dh or I.

 

Not to the same extremes but I do have done a lot of those things... nailbiting, list making but getting nowhere past making the list, thinking things like if it takes less than XX steps to get there than XX will happen (Not sure if this wasn't just my silly way of wishing for good things though and being superstitious about it)...

 

but I can tell you that it is almost encouraging to me to think that maybe some of us do have it because we are functioning members of society, with families, relationships, friends, happiness....without interventions...

 

Exactly what I was thinking.

 

None of my behaviors have ever been soooo over the top that anyone else would ever think twice about them beyond being my particular quirks.

 

My son's symptoms are definitely worse than mine, beyond what a parent could just rationalize away as quirks, but they still really aren't bad. Most people don't even realize he has tics or OCD. And while most people would agree that he is emotionally an intense child, he is well liked by kids and teachers alike. And as he's grown he has learned how to manage much of it. Even if we didn't do anything, I tend to think he'd be functioning just fine as an adult.

 

But since we have started the Biaxin and noticed such an improvement, especially in mood, I do hope there is a way to help him get from here to adulthood in a happier, more normal state.

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