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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 




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BIPOLAR RELATED TO PANDAS?


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#1 ~Red Head~

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Posted 09 September 2010 - 09:55 AM

I have just recently begun reading about PANDAS, and I have a question. My daughter was diagnosed this year with bipolar disorder. She is 19 now. I've had problems with her since she was about 15. It was almost like it happened overnight. She has gone into rages, punched holes in our walls, and it has been a nightmare for me. I will spare you all the not-so-great details. but I will share a bit of her history and lead you up to why I am curious as to whether PANDAS is related to bipolar disorder.

By the age of 5, she had several bouts of strep and had scarlet fever once. Her pediatrician referred her to an ENT doc to see if a T&A was warranted. It was, and she had the surgery without any problems; however, 9 days after her surgery, she began to cry with her hips and had trouble walking. Then it would migrate to her knees, and then on down to her ankles. She said her ankles felt like glass, like they wouldn't bend and would break if she walked. She ran a low-grade fever with these joint symptoms too. Any amount of rest or being idle would bring on this joint stiffness and pain. For her 10-day postoperative followup with the ENT, I had to carry her into his office. I explained to him about her joint problems, and all he said was "Well, she doesn't have rheumatic fever." Well! I didn't say she did. I was clueless. I just wanted an answer. I left there very disappointed, so on our way home from that long trip, we stopped at her pediatrician's office, and she saw my daughter. She ran some blood work and examined her. The next morning, she called and said my daughter had astounding lab work. Her ASO titer was 800 and her sed rate was upper 60s. The pediatrician was stumped too. This happened in February of that year. It took us until August to finally get a diagnosis. After the ENT, the pediatrician, back to family physician, then to a pediatric rheumatologist who was clueless (even with her intitial lab data in front of him) and said "We'll just call it growing pains." I left there so mad. It was a 1-1/2 hour trip from home. Anyway, I had my mammogram during all this, and the mammogram tech told me her grandson had JRA and gave me the name of his rheumatologist. We went there as soon as they had an opening. This pediatric rheumatologist worked with his father (who was on the panel of physicians that came up with the criteria to diagnose rheumatic fever). He looked at her lab work, how long her symptoms had been going on, and examined her. He said "I spoke to my father about your daughter. We agree that this is classic rheumatic fever and wonder how anyone could have missed it." He prescribed monthly injections of Bicillin 1,000,000 IU until she is 18 for prophylaxis.

We moved when she was 12 years old, so we changed pediatricians. He wanted to refer her to a pediatric cardiologist to see if she had heart valve damage. She saw the cardiologist who did an ECHO and said she had absolutely no heart valve damage and that he saw no need to keep her on the prophylactic antibiotic until she is 18. He said he even "questioned her history of rheumatic fever" because, according to him, once a person has rheumatic fever, they don't continue having joint stiffness and pain after the initial episode. I disagree because I know people who had RF when they were young and STILL have joint stiffness and pain. Anyway, he said when she is 15 to discontinue the antibiotic, and he wrote her a Rx for oral antibiotics rather than the monthly injections.

When she was around 14-1/2 I went ahead and discontinued the antibiotic altogether since she was so close to turning 15. Around that time, I began to have problems with her, and it progressed to the point that we ended up in counseling. I first brushed it off as teen rebellion, and I think they did too in the beginning. Now after several holes punched in the walls, calling the police on her a couple of times, letting her live with someone else in another state and go to school, and many, many other issues I won't bore you with, I think they finally see it as more than rebellion. They say she's bipolar now and possibly has borderline personality disorder. I told the counselors that I've had problems with her since around age 15, and it was almost an overnight change. They asked me if anything traumatic happened in her life, and I could think of nothing. After reading about PANDAS in the last month, I can't help but wonder if taking her off the prophylactic antibiotic when she was almost 15 had anything to do with her behavior. I had never thought of this until I read about PANDAS. I wonder if putting her back on antibiotics will help her to be normal again. Even she knows something is wrong. She stays in such a rage that she cannot control, and it's almost scary to me at times. She looks like she's channeling an evil spirit sometimes when she's mad. She has even growled at me.....yes, GROWLED! I miss my little girl. I want her back. It has been heart breaking to me. She attacked me yesterday and punched me with her fists. This is not the little girl I raised. Can anyone help? Any answers or suggestions? Thanks for reading my long post. I apologize, but I had to get the necessary details in to portray the full picture.
Kathy
Sufferer of trichotillomania since age 11; mother of bipolar teenage daughter with Hx of rheumatic fever.


#2 eamom

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Posted 09 September 2010 - 10:54 AM

Hi Red Head,

Welcome!

A child psychiatrist once told me that bi-polar is a "throw-away diagnosis". (I'm assuming she was referring to bipolar for kids...adults might be different?!). Okay, now that I think about it, I'm not sure what "throw-away diagnosis" means exactly, but I assume it means that they don't *really* know what is wrong with the kid, and he/she fits certain symptoms, so they call them "bi-polar".

In any case, IMO your dd's history/symptoms sounds *VERY* suspicious for PANDAS. BTW, (almost all) of "bi-polar" symptoms are also PANDAS symptoms. Below is from http://bipolar.about.../red_flags4.htm Speaking as a parent who had a PANDAS dd severe enough to require hospitalization (2.5 years ago, doing LOTS better now thanks to antibiotics/IVIG) I can say that dd had most of these "bi-polar" symptoms when her PANDAS was at its worst. (I should say outright that I am actually a pretty firm believer that a good percentage of "bi-polar" kids are actually undiagnosed PANDAS.)

Very Common Symptoms of Early-Onset Bipolar Disorder

* Separation anxiety
* Rages & explosive temper tantrums (lasting up to several hours)
* Marked irritability
* Oppositional behavior
* Frequent mood swings
* Distractibility
* Hyperactivity
* Impulsivity
* Restlessness/ fidgetiness
* Silliness, goofiness, giddiness
* Racing thoughts
* Aggressive behavior
* Grandiosity
* Carbohydrate cravings
* Risk-taking behaviors
* Depressed mood
* Lethargy
* Low self-esteem
* Difficulty getting up in the morning
* Social anxiety
* Oversensitivity to emotional or environmental triggers

Common Symptoms of Early-Onset Bipolar Disorder

* Bed-wetting (especially in boys)
* Night terrors
* Rapid or pressured speech
* Obsessional behavior
* Excessive daydreaming
* Compulsive behavior
* Motor & vocal tics
* Learning disabilities
* Poor short-term memory
* Lack of organization
* Fascination with gore or morbid topics
* Hypersexuality
* Manipulative behavior
* Bossiness
* Lying
* Suicidal thoughts
* Destruction of property
* Paranoia
* Hallucinations & delusions




Would you mind posting were you live? Maybe someone can rec. a doc?

You might consider doing a current throat culture on her (and all family members). In any case, I wouldn't be surprised if she did a lot better on Full-strength antibiotics (many find better success with "big gun" antibiotics like augmentin or Azithromycin, vs. oridinary pen.)...start with a trial of at least 1-2mo. to see if there is improvement in behavior.

Good luck! I'm glad you figured out the likely PANDAS connection and found this forum! It will help a lot.

Edited by EAMom, 09 September 2010 - 11:25 AM.


#3 dcmom

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Posted 09 September 2010 - 11:20 AM

Wow- EAmom- between my two pandas girls we have had almost all of those symptoms at some point. Makes me agree- those are signs for pandas- not bipolar! I mean- bedwetting? that is classic pandas!

Redhead-

I would strongly urge you to see one of the docs that TREATS pandas- where do you live?

#4 llm

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Posted 09 September 2010 - 11:29 AM

My sister is bi-polar and I can only speak about personal experience. With her, the moods are more a wax/wane pattern. For days, weeks, months, she'll be very very "Up" - like on speed, everything is going to be rosey and wonderful. Then she feels it slipping away and goes into a funk - for days, weeks, months, where everything is awful, no one can do anything right and she becomes very provoking - picking irrational arguments and needling everyone around her until they snap. It's like she has this paranoia that everyone is going to leave her and she pushes and pushes until she almost gets a self-fulfilling prophecy.

But her bi-polar isn't something that changes throughout the day. There are bad periods and good periods, but it's not like an on/off switch. You can tell which kind of period she's in. It's not like every second of every day is bad, but there's a general tone.

My personal experiences with PANDAS is that it's more like rapid mood swings throughout the day, and we personally don't deal with much depression - perhaps that's due to youth. I don't want to discourage you from searching for answers. Certainly a compassionate doctor willing to do an experiment of a few months of antibiotics may help.

Does your daughter also experience OCD, any movement disorder, any separation or general anxiety, any attention issues? Can she explain what's happening?

It may also be worthwhile to explore Cognitive Behavior Therapy to help her gain some control tools.
Please keep us posted.

#5 eamom

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Posted 09 September 2010 - 11:44 AM

My personal experiences with PANDAS is that it's more like rapid mood swings throughout the day, and we personally don't deal with much depression - perhaps that's due to youth.


My dd (7.5 years at the time) *definitely* had depression when her PANDAS was at it's worst. She stopped playing with other kids and considered herself to be a "bad person". She became so withdrawn that her teacher thought she had been sexually molested. At the same time, she had the frequent mood swings, oppositional behavior, OCD, irritability, rages....almost everything on the kid's bipolar list.

#6 vickie

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Posted 09 September 2010 - 11:52 AM

My son would have that generalized funk or "difference" about him plagued with rapid mood swings as well. Bipolar was once thrown at us as a possibility by a pediatrician who didn't kow what he was talking about.

As to Red Head's reference about growling and channelling an evil spirit, "Exorcist Syndrome" has been discussed on here before and how it relates to PANDAS http://www.latitudes...h=1

Edited by Vickie, 09 September 2010 - 11:52 AM.


#7 tpotter

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Posted 09 September 2010 - 12:18 PM

Wow...your description is EXACTLY like my now 17 yo DS. Started suddenly at 15, rages, punching holes in walls, even became suicidal with a plan! He also had strep as a young child, had stomach problems that required surgery, and had an allergic reaction to the MMR vaccine (I don't know if your DD had all of that, but certainly some of it.) We don't know when he got PANDAS, specifically, but we have at least dated it back to 1st grade...he's now in 12th (I suspect it was much earlier), because we just found a 1st grade writing journal of his, and his handwriting changed overnight (I showed it to Dr. L. at our last visit, and it was very significant.)

Now, to answer your question. Yes, the diagnosis of Bipolar certainly came up several times. We tried Lithium, Risperadol, and more recently Lamictal. Lithium did nothing (except make him nauseous every morning), Risperadol did nothing except take away his appetite, and Lamictal gave him THE RASH (and otherwise, did nothing.) As our neurologist stated: "I think we pushed that diagnosis into the ground."

We had the Cunningham test last year for him, because our younger son was diagnosed with PANDAS (more classic symptoms), and we found out about these symptoms through a paper that Dr. K. had written. Sure enough, his numbers were in the PANDAS range.

Every time he took abx, his symptoms went away overnight (azith first, then Augmentin, and now we just keep him on Augmentin XR.)

Last September, he got PEX, and most of his symptoms went away. They are certainly coming back again, and we have been trying to get him IVIG (I'll spare you the details, but we did repeat Cunningham's test, and it was elevated.)

So, here's my answer. Bipolar is not PANDAS, but I would highly suspect that your DS has PANDAS, and not Bipolar. PM me, and I'll send you some more information that might help you, particularly since she is older, and has probably had it a very long time like my DS.

1) Get the Cunningham test. Particularly since she is being treated for Bipolar, it's really important that you have these numbers to help you feel comfortable that you are dealing with probable PANDAS, and to help you get the right tx.

2) In the meantime, get your dr to prescribe at least one round of abx. The abx of choice is usually Azithromycin or Augmentin XR. When we used Azith it was 500 mg either 1X per day or 250 mg 2X per day, and my DS is using Augmentin XR 1000 mg BID. If your DD's dr. is hesitant, I would have her contact Dr. K., because he really understands so much about the older child (not that the others don't, but he's the one who put all this down on paper, so that I was able to figure out my DS had it.) If there's a positive response, you know you're dealing with an infection.

3) It is highly possible you may be dealing with an immunological issue (that the infection could have caused), a tic-borne disease, e.g. Lyme, etc., so I would very highly suggest that you consult with an immunologist (depending where you live, there is a list of doctors that people on this forum have used.

Again, PM me, and I can give you a lot more detail. This is very near and dear to my heart, because we are both dealing with older teens, same presentation, who have probably had it a long time, we have been on this a long time, and I can offer you the benefit of my experience (so you don't repeat many of the mistakes I did.)

#8 dcmom

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Posted 09 September 2010 - 12:57 PM

LLM- I am sorry about your sister :( That must be tough.

My older daughter had MAJOR depression with pandas. PANDAS hit her mildly, for about 9 mos. After H1N1 it hit her like a mack truck- major episode. She was 9 at the time, old enough to know she lost herself- but not being able to do anything about it. The depression was very scary. It went away immediately with pex.

Interestingly- LLM- my dd definately does this thing (like you describe with your sister) where she pushes and picks at me, her dad and sister. She is oppositional, starts arguments- and I think a lot of what is behind it is she is afraid she is a bad person, and that people won't forgive her- so she does stuff to make things worse. We are going through this right now, as she is (hopefully) recovering from a recent pandas episode. This is definately a pandas thing for her, as it was never present before, and goes away completely when she is "healthy". I do think it is an underlying ocd issue- that is buried beneath a prickly exterior.

The bipolar list that EA mom posted- perfectly describes my kids symptoms. They are not bipolar. These symptoms came on overnight, triggered by infection, and snowballed for several months. ALL symptoms disappear with proper treatment, and when healthy. There are only about 4 symptoms on the list that one of them hasn't had. Both of them probably had at least 75% of those symptoms at the same time, during the worst of it.

I just think, if this is a list that docs are going off of for bipolar- lots of pandas kids (and teens) will be misdiagnosed. I am not saying there is no bipolar (I really know nothing about bipolar and/or its treatment and diagnosis)- I am just saying that this list pertains exactly to what my kids went through with pandas. Maybe the only difference being the overnight change (although with older dd- this overnight change may have been a bit harder to see if we didn't have her sister).

I strongly suggest to redhead that you look at pandas. Maybe it will be a dead end- but you won't know until you try. You really need to get to Dr K (chicago), Dr B (Connecticut) or Dr L (Maryland). They are the only three that seem to really have a handle on this thing. Don't waste your time mentioning pandas to another doc- they dont' get it, and won't treat it aggressively. You will have to travel- I am sure- but in the end- whatever the diagnosis- it will be worth it.

#9 eamom

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Posted 09 September 2010 - 02:36 PM

I should add that different PANDAS kids can have very different symptoms...some have lots of OCD, some little, some have major tics, some none, some seem to have primarily mood issues, or ADHD, or anxiety. Moreover, OCD doesn't always look like the "classic handwashing" that most folks think of as OCD. Our dd had LOTS of defiance when her PANDAS was at it's worst, and our child psychiatrist (ocd specialist) explained that defiance can be a form of OCD.

#10 purple66p

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Posted 09 September 2010 - 02:41 PM

Many psychiatrists (my son's included) do not look for causes, such as an autoimmune reaction to an infection, but rather just find a label to slap on the kid. Then they have a list of medications that they can throw at the child because that is the "treatment." They are consigning kids to a lifetime of symptom management, not recovery. My 13 year old son was "diagnosed" as bipolar and OCD at age 7. (Age 7!!) We've been traveling the medication merry-go-round for 6 years. I wish I had known about PANDAS and medical causes for "mental illness" earlier instead of wasting half of my son's childhood.

#11 ~Red Head~

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Posted 09 September 2010 - 03:23 PM

Thank you EAMom! I am beside myself here. I never expected such a quick response or so many responses. I wonder if the psychiatrist who told you that bipolar is a throw-away diagnosis meant that there's no specific test, but you just have to rule out everything else...kind of like fibromyalgia or psoriatic arthritis. Anyway, thanks for the input. I live in the educashun state (Tennessee). :D I live a little over an hour from Knoxville right where TN, VA, and KY all meet, so I can go over into KY around Corbin, London, or on a little farther to Lexington (2 hours or so from home). In Tennessee, I could go to Knoxville, Johnson City, Kingsport, or Morristown. I am very excited about getting this going. I just took my daughter to work, and I asked if she would be willing to check into this, and she said yes. I feel like we're on the right track now. I do have a question about bipolar though. One of my best friends is very skeptical about "bipolar." She says "If a person can control their rages in public, why can they not control them at home toward the people that love them the most?" I have always questioned that. One counselor told me that possibly at home there are more triggers, not that I am the cause, but there are more boundaries, rules, etc. I don't know. Lots of unanswered questions. Maybe someone can shed light on that subject.

Hi Red Head,

Welcome!

A child psychiatrist once told me that bi-polar is a "throw-away diagnosis". (I'm assuming she was referring to bipolar for kids...adults might be different?!). Okay, now that I think about it, I'm not sure what "throw-away diagnosis" means exactly, but I assume it means that they don't *really* know what is wrong with the kid, and he/she fits certain symptoms, so they call them "bi-polar".

In any case, IMO your dd's history/symptoms sounds *VERY* suspicious for PANDAS. BTW, (almost all) of "bi-polar" symptoms are also PANDAS symptoms. Below is from http://bipolar.about.../red_flags4.htm Speaking as a parent who had a PANDAS dd severe enough to require hospitalization (2.5 years ago, doing LOTS better now thanks to antibiotics/IVIG) I can say that dd had most of these "bi-polar" symptoms when her PANDAS was at its worst. (I should say outright that I am actually a pretty firm believer that a good percentage of "bi-polar" kids are actually undiagnosed PANDAS.)

Very Common Symptoms of Early-Onset Bipolar Disorder

* Separation anxiety
* Rages & explosive temper tantrums (lasting up to several hours)
* Marked irritability
* Oppositional behavior
* Frequent mood swings
* Distractibility
* Hyperactivity
* Impulsivity
* Restlessness/ fidgetiness
* Silliness, goofiness, giddiness
* Racing thoughts
* Aggressive behavior
* Grandiosity
* Carbohydrate cravings
* Risk-taking behaviors
* Depressed mood
* Lethargy
* Low self-esteem
* Difficulty getting up in the morning
* Social anxiety
* Oversensitivity to emotional or environmental triggers

Common Symptoms of Early-Onset Bipolar Disorder

* Bed-wetting (especially in boys)
* Night terrors
* Rapid or pressured speech
* Obsessional behavior
* Excessive daydreaming
* Compulsive behavior
* Motor & vocal tics
* Learning disabilities
* Poor short-term memory
* Lack of organization
* Fascination with gore or morbid topics
* Hypersexuality
* Manipulative behavior
* Bossiness
* Lying
* Suicidal thoughts
* Destruction of property
* Paranoia
* Hallucinations & delusions




Would you mind posting were you live? Maybe someone can rec. a doc?

You might consider doing a current throat culture on her (and all family members). In any case, I wouldn't be surprised if she did a lot better on Full-strength antibiotics (many find better success with "big gun" antibiotics like augmentin or Azithromycin, vs. oridinary pen.)...start with a trial of at least 1-2mo. to see if there is improvement in behavior.

Good luck! I'm glad you figured out the likely PANDAS connection and found this forum! It will help a lot.


Kathy
Sufferer of trichotillomania since age 11; mother of bipolar teenage daughter with Hx of rheumatic fever.

#12 ~Red Head~

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Posted 09 September 2010 - 03:32 PM

Hi DCMom. I live in Tennessee, right where TN, VA, and KY all meet. I could go to any of the three states, but anywhere I would go in VA would probably be too far since the southwest end of VA is not much more than hills, "hollers," and the beautiful Appalachian Mountains.

Wow- EAmom- between my two pandas girls we have had almost all of those symptoms at some point. Makes me agree- those are signs for pandas- not bipolar! I mean- bedwetting? that is classic pandas!

Redhead-

I would strongly urge you to see one of the docs that TREATS pandas- where do you live?


Kathy
Sufferer of trichotillomania since age 11; mother of bipolar teenage daughter with Hx of rheumatic fever.

#13 ~Red Head~

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Posted 09 September 2010 - 03:52 PM

Hi LLM. You mentioned that bipolar has longer periods of mania and depression, that it's not daily mood swings all day. I read a long time ago that there is a difference in frequency and length of moods in bipolar children and teens as opposed to adult bipolar. My daughter's moods are very unpredictable, and I walk on egg shells every day not knowing what's next. A psychiatric nurse told me she believes she fits "borderline personality disorder" more than bipolar. But I'm just excited that it could simply be PANDAS and that antibiotics could be all we need to bring my little girl back to her senses. I found this website that I will share. Thanks for your kind input. See website below...

http://www.nimh.nih....y-to-read/index


My sister is bi-polar and I can only speak about personal experience. With her, the moods are more a wax/wane pattern. For days, weeks, months, she'll be very very "Up" - like on speed, everything is going to be rosey and wonderful. Then she feels it slipping away and goes into a funk - for days, weeks, months, where everything is awful, no one can do anything right and she becomes very provoking - picking irrational arguments and needling everyone around her until they snap. It's like she has this paranoia that everyone is going to leave her and she pushes and pushes until she almost gets a self-fulfilling prophecy.

But her bi-polar isn't something that changes throughout the day. There are bad periods and good periods, but it's not like an on/off switch. You can tell which kind of period she's in. It's not like every second of every day is bad, but there's a general tone.

My personal experiences with PANDAS is that it's more like rapid mood swings throughout the day, and we personally don't deal with much depression - perhaps that's due to youth. I don't want to discourage you from searching for answers. Certainly a compassionate doctor willing to do an experiment of a few months of antibiotics may help.

Does your daughter also experience OCD, any movement disorder, any separation or general anxiety, any attention issues? Can she explain what's happening?

It may also be worthwhile to explore Cognitive Behavior Therapy to help her gain some control tools.
Please keep us posted.


Kathy
Sufferer of trichotillomania since age 11; mother of bipolar teenage daughter with Hx of rheumatic fever.

#14 dcmom

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Posted 09 September 2010 - 04:13 PM

Hhhmmm- I think there is a doc at Tulane who might be helpful to pandas. Could you get there? Otherwise, truly, you might need to go to DC or Chicago. Hopefully someone else will post with doctor ideas.

#15 ~Red Head~

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Posted 09 September 2010 - 04:17 PM

Well, DC is about 8 hours away, and Chicago is about 10-12 hours away. My son lives in southern Wisconsin, and he's only an hour from Chicago. But that's him, not us. LOL. Does anyone know of a doctor in Knoxville, TN who is on the up and up about PANDAS. I make a trip to Knoxville maybe 5-6 times a year. It's an 1.25 hours from my home.

Hhhmmm- I think there is a doc at Tulane who might be helpful to pandas. Could you get there? Otherwise, truly, you might need to go to DC or Chicago. Hopefully someone else will post with doctor ideas.


Kathy
Sufferer of trichotillomania since age 11; mother of bipolar teenage daughter with Hx of rheumatic fever.




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