~Red Head~

Could someone give me the name of a doctor who treats PANDAS in Eastern TN, namely Knoxville, Kingsport, or Johnson City. Someone gave me a a couple of names a few weeks ago, but I have misplaced it. One was a female doctor. I am at my wits end with my daughter her bipolar/?PANDAS is really bad. I had to have her arrested last 2 weeks ago. She has gotten violent with me in the last month, pushing me, beat another hole in the wall, and shoved me off 2 steps. Tomorrow I have court regarding this, and I am heart broken. She has beat holes in the walls since she was 15. She is 19-1/2 now. Very intelligent, but emotionally she's about 13 yrs old. I want her to get the medical help she needs, not just psychiatric help. I pray something good comes of this.

Your dd sounds like mine. She is bipolar and/or possibly borderline personality disorder. In my opinion, borderline fits her more, but time will tell. A good book to read is "Stop Walking On Eggshells" by Randi Kreger. I read that book, and it was like reading my own life. There is also a website you can go to called bpd central. They have a support group called Welcome To Oz (WTO). It's has been a haven for me. I don't visit regularly, but the people there are wonderful and have gone or are going through the same thing as I am with my daughter. My daughter BLAMES me for everything. She sees black and white only (in that she cannot see that a good person can make a mistake; she sees them as bad or good, no gray areas). Her perception of things is so distorted that she cannot really see how things really are. Bipolar and Borderline Personality Disorder symptoms kind of overlap. My daughter does not have trichotillomania; however, I do. Sometimes she will pass by me while I'm pulling my scalp hair and smack my hand and say "stop it." I tell her that I pull my hair out TO KEEP FROM PULLING HERS OUT!!" Good luck there. My advice is to make her be responsible and accountable for her own actions...something I've failed in doing unfortunately. But I'm excited because it seems that there is a link between bipolar and PANDAS. Good luck! My

It's ok. I'm long winded when I get excited about something. LOL

I have talked online to people with trich. There's a message board for trich called Daily Strength dot com. I'm on there, but I can't remember my screen name now. LOL. It's been a few weeks since I visited that site. I can soooo relate to how you feel about the length of time it takes to get ready to go to school or anywhere. I used to miss the bus all the time in high school. Between my 11th and 12th grade year, I went to Illinois to stay with my aunt and try to find a summer job. With my first paycheck I wanted to buy mascara for my lower lashes, and black linear to try to mask my bald upper eyelids. Lo and behold, I saw fake lashes. Thought I would give them a try. I was 17 then, and now at age 52, I am a PROFESSIONAL at gluing those babies on! I love the variety of lashes they have at Sally's (cosmetology product store). Do you have one where you live? I have red hair, and they have some long fluffy ones that have a reddish tint. I like to wear them when I want to look "natural." Ha! Anyway, I've been doing medical transcription for 18 years. I have been quite punctually challenged because of my trich, trying to look as normal as the other office staff. It's sux. It really does. I finally began working at home online for the last 3 years, and it's great. I don't have to be so perfect. I can wear my lashes or not. Heck, I work in my pajamas A LOT and forget to even brush my hair til the day's end sometimes. I don't know if that's good or not, but this job works so well for me and my trich. You are where I was when I started, young and in high school. Thank goodness they are finding all kinds of answers. Back when I started doing it, we didn't have computers to surf and online support groups and message boards, etc., and I thought I was the only person in the world who did this. It has affected my whole life. Still does to a point. Like when you want to shower with your hubby, but you can't because your lashes might wash down the drain or at least the glue come loose and only one corner holding it on. I try not to cry so the glue doesn't come loose. (Dark tone glue is better if you cry because it stays dark). When you get the white glue, even though it dries clear, if you cry or your eyes get wet, the glue turns WHITE again, and then it's quite noticeable that you're wearing fakies. I learned that trick years ago. I feel for you, but we can hold each other up, and maybe this PANDAS/strep thing is our saving grace. PM me any time you like. ~Red~

Nancy, I had read about N-Acetycysteine for trich. Some people on a message board told me I can get it OTC or at a nutrition store. I called Walmart to see if they have it OTC, and they said it's not an OTC medication. It has to be prescribed, so I talked to the dermatologist, and she called it in to the pharmacy. It comes in little vials that look just like insulin vials; however, it is taken orally, they told me 3 mL twice a day mixed in diet coke. I think it might have a funky sulfur taste if you don't put it in something. It's an amino acid. So, I'm as confused as you regarding the OTC and the prescribed, and I wonder if we're using the same thing. Maybe Wally World Pharmacy was just trying to make a buck. I have to draw it out with a dropper until I get 3 mL.

I have a rather mild case of psoriasis, mostly in the scalp. In fact, when the dermatologist biopsied my scalp at my request, I had no idea there was psoriasis there. But since she biopsied it, seems like it has picked up momentum or something because I have patches here and there, but guess what.....only on the places where I pull out my hair all these years. I don't have patches elsewhere. Now I'm wondering if I could have strep or be a carrier. I admit to a scratchy throat lately and was wondering if ragweed was the culprit as I live in the country. But heck! I grew up in these hills and "hollers" with ragweed and every kind of weed imaginable and I have no bad environmental allergies. On the other hand, my older daughter who has psoriasis (and her 4 and 6 year old sons have psoriasis too) has TERRIBLE allergies, always snotty, always sneezing, always sick. Her boys are like her too. When my bipolar daughter was going through her acute rheumatic fever episode, before actually got the diagnosis, her family doctor and pediatrician wondered if she was a strep carrier. It took 6 months for her ASO titer to come from 800 down to 200. I don't know if that is normal or not. Wow! It sounds like strep is the culprit for A LOT of medical/"psychiatric" conditions. This is so exciting to me. I've always wondered if people who have psychiatric disorders just have something that has affected their brain. The brain is an organ just like any other organ that gets attacked by viruses and bacteria, etc. I'm so excited about finding my daughter help. I am not sure where to start. On the first post I wrote about her being bipolar, I got a response from someone who offered some pediatrician's names in Johnson City, TN, which is certainly closer than Chicago or Maryland for us. The problem is that my daughter is 19-1/2. Will a pediatrician still see her about having PANDAS with her history of RF?

Thank you Isabel. Yes, mother's will go to the ends of the earth to help their child, even their adult child. Funny....my daughter's name also is IsaBelle.

Ok, I'm sorry. I see they are in Johnson City. I missed that at first. My question is....will the insurance pay for PANDAS? One lady told me she's having a problem with the insurance refusing to pay for PANDAS. I guess they don't consider it a real diagnosis? Looks like they would rather pay out for a few antibiotics than a bunch of psychiatric medications that nearly all fail.

Thank you, MKUR. Are these physicians in TN and are they actively treating PANDAS children?

I don't know any other way but to just be blunt here. Flipping someone's ear is about like flipping...a goober,( )only you come up behind someone and flip the back of their ear lobe or anywhere on the ear. Does that answer your question EAMom? LOL I thought maybe a brain surgeon would have something to do with PANDAS since it is related to the basal ganglia. I dunno. OKay, I don't know what flipping an ear is! But, it sounds pretty funny. okay, a brain surgeon...hmmm. I don't think that would have too much to do with PANDAS. Honestly, it seems that many MD's are *so* specialized these days that they really don't know much outside of their areas of expertise.

I tried that website but had no luck opening it. Yeah, my daughter's case is different since she is older, and also my case is different because I am DEFINITELY older, 52, still suffering from trich.

No MDs in my family really, just my ex-brother-in-law's first cousin who I went to school. He became a neurosurgeon and practices in Biloxi, MS. I actually typed him a letter this week, but I am hesitant to send it. Not sure what his response will be. My best friend and I used to flip his ears during recess. He never would take a recess or do PE. Always studied. We always said "That boy is gonna be a brain surgeon some day." Prophecy fulfilled! Ha! So, would a neurosurgeon have any dealings with PANDAS? I mentioned that in my letter, but I've nearly talked myself out of sending it.

Thank you. I just joined this forum today. I first posted about my daughter being bipolar and with a history of multiple strep infections and ultimately rheumatic fever. Then I got brave and shared my trich disorder. Hey, I'm almost totally bald on top. Dr. Phil would be prouder of my head! I wear a hair piece to cover it up. And I wear fake lashes on top. There is a skinny twig of bangs right in the middle of my forehead and a narrow strip of hair right where a middle part should be. It looks like my left brain and right brain. Reminds me of a dermatome pattern. I pull my upper lashes out, but not my lowers. Is that not crazy as H. E. L. L.? I asked my dermatologist "If it's just a hair pulling urge, why don't I pull the rest of my hair out, because there's plenty more on the rest of my head, and why don't I pull out my lower lashes?" She replied "Because people just fixate on a certain area." Okay??? The thing of it is, I don't get those "sensations" that draw my hand to my head or my upper eyelashes anywhere else but on top of my scalp and my upper eyelashes. If I had those sensations elsewhere, I believe I would pull from there too. You really cannot understand that 'sensation' unless you suffer from trich. It's hard to explain that sensation, but the psychiatrists all think it's an overwhelming sensation that takes over your mind like pyromania or kleptomania. IT'S NOT IN MY MIND, FOLKS; IT'S IN MY SCALP. TRUST ME. I KNOW MY OWN SCALP. I wrote a poem in 2000 and entered it into a poetry contest. Much to my astonishment, the International Library of Poetry published it in one of their many poetry books called "The Colors Of Life." And I will share... Friend or Foe? We've been together for so many years, I've shared my laughter and my tears. You've been the dearest friend to me, And yet, you are my worst enemy. Like an addict who struggles to be free, Like a blind man who hopes to someday see. I grasp at the hope to someday be free From this insatiable hold you have on me. You allege to be my strength and comfort And take away all the pain. And yet, you betray me day after day. You've caused me so much hurt and shame. Who are you? What are you? Why can't I let you go? I search to know the answer, Are you my friend or foe?

Just too funny! I can see the humor in it. When they are 19, it's hard to see the humor though. Thanks for the laugh.

Long story....from a long-winded lady. Sorry! wrote long story..you are fortunate it got erased in short..yes ds' allergies trigger this...it does feel like it is biting and then feels need to pull... of course ped rolled eyes at me when i mentioned pandas, trich...but she did prescribe shampoo with selenium..higher dose then selson blue..but maybe you could start there... she did see his scalp looked scaley..i didnt see it but she did..so maybe its minor...but it was only the last 2 springs...and now it happened just last week or so...sent ds to shower..in the morning of his own fruition....said mom that shampoo realy works....i also started using quercitin that night for allergies.. ps..ds has had strep many times...it can be strep induced...step pandas may go away but other things can trigger it

Hi there. You're right on track. I do have hypothyroidism. I've been on Synthroid since the 80s. I just had my levels checked, and they were fine. I had a CT scan of my thyroid a couple of years ago, and the radiologist asked me if I had my thyroid removed. I told him no. He said my thyroid has shrunk up so small that he thought I might have had a partial thyroidectomy. About the N-Acetylcysteine, I already asked the dermatologist about that very recently, and she called it in for me. I started taking it, but you have to drink it with Diet Coke, and I rarely keep soda in the house, so I keep forgetting to buy it when I'm shopping. I was supposed to mix 3 mL in a glass of Diet Coke. I suppose I should write it on my grocery list so I will remember to pick it up!

So, could I be treated with a strong antibiotic and those urges completely go away?

Okay. Here I am again, but with a different, yet same, subject....PANDAS, only this time it's related to trichotillomania. I have a hard time discussing this with anyone and have never discussed it until just recently when I was in counseling over my "bipolar" daughter. I have suffered from trichotillomania since age 11. I've read that PANDAS could be the cause of this also. I am now 52, and I have yet to conquer this. I remember having sore throats here and there as a child, but we just didn't go to the doctor much at all. I have very few recollections of ever going to a doctor during my childhood. My sister and I had the whooping cough and saw a doctor then. I saw a doctor for a spider bite around age 12 or 13. Anyway, a few months ago, I started Cymbalta because I got so depressed and distraught over my daughter's "bipolar" condition and the every day rages, etc. With my initial intake with the counselor, he asked me if I have any obsessions, compulsions, etc. I almost said "no" but being that I am not a liar, I swallowed my pride and told him about my trich. (So very embarrassing) He asked me if this is something for which I would like to get help. I told him sure. Trichotillomania carries quite a social stigma, and I'm really brave in posting this. I told the counselor that I cannot help but believe that trich could have a dermatologic etiology. He said that the only way to know would be to go to a dermatologist, and if dermatology cannot find anything, then we will deal with it on a psychological level. So I loaded up my bravery, left my pride at home, and drove to a dermatologist an hour away (so as not to meet up with anyone who would know me in case I had to take off my precious hair piece and show my baldness). One of the nurses at the dermatologist's office called me back and took all my personal information. When I told her I was there because of "a hair pulling problem." She just stared at me. Okay, it's embarrassing enough....stop staring at me NURSE LADY! Then she asked me my age, and then hesitated again....then she asked me my maiden name. I thought "What has my maiden name got to do with anything?" But I went ahead and told her. Then she said "I went to school with you!" I kept looking at her, trying to figure out who she was, then I recognized her. OMG! I told her that I drove an hour away to be sure no one knew me, and "here you are." LOL. But she has been wonderful in trying to help me. The dermatologist biopsied my scalp at my request. She assured me it is purely psychological, said I have OCD, and that the biopsy would most likely not show anything. Well, the biopsy did show something, but she says that's not the the cause of my trich. I have psoriasis-form dermatitis and infundibulofolliculitis (inflammation of the upper part of the hair follicle where it pierces through the skin). She wanted to put me on Orap, but it is contraindicated with my Cymbalta and also my flecainide (rhythm regular for Hx of atrial fibrillation). She started insinuating that I have "delusions of parasitosis" because I wondered if there could be a dermatologic etiology for my trich. I nearly died. I don't feel bugs crawling all over me, but I do admit there is a sensation in my scalp immediately before my hand goes to my head. Anyway, since I cannot do the Orap, she said to talk to my counselor and try to come up with something better than Cymbalta. I really feel like my trich has been worse since beginning the Cymbalta a few months ago. I used to go for up to 3 weeks without pulling my hair, but since being on Cymbalta, I do it daily. Can anyone tell me if antibiotics are a cure for trichotillomania since it is thought to be another PANDA condition? Could I be an "old" PANDAS victim?

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.

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.gov/health/publications/bipolar-disorder-in-children-and-teens-easy-to-read/index

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.

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). 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.

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.