~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.