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PANDAS AND TRICHOTILLOMANIA


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Hi - you'll have to excuse my ingnorance but is synthroid T4 and T3. I use levoxyl for the T4 bit and cytomel for the T3 and it's the cytomel that really seemed to help the biting.. I started it first and when I stopped the cytomel for a bit my energy levels felt ok but some "gloom" came back......

 

are you still on cytomel...i says to only take for 6 weeks at a time....

do you cycle on and off.???

did a doctor prescribe this for you

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Hmmm. Hypothyroidism can be autoimmune as well. http://www.cumc.columbia.edu/dept/thyroid/hypothyroidism.html

 

The most common cause of hypothyroidism in the United States is chronic autoimmune thyroiditis (Hashimoto's thyroiditis), a condition characterized by inflammation and damage to the thyroid tissue. Damage occurs because immune cells which usually fight off infection and colds, attack the body's own thyroid tissue instead.

 

* Autoimmune Diseases

If you have other autoimmune diseases, you may also be at risk for Hashimoto's thyroiditis. Some common examples of these autoimmune diseases include rheumatoid arthritis (the immune cells attack the joints) and diabetes (the immune cells attack the pancreas which produces insulin). In fact, about 10% of patients with Type I or juvenile diabetes mellitus develop chronic thyroiditis during their life. If you are diabetic and have thyroid disease, the amount of insulin you need every day may change. It is therefore important for patients with diabetes to be checked for thyroid disease by routine thyroid function blood tests on a regular basis. Still other examples of autoimmune diseases include vitiligo (a skin condition in which patches of skin lose their color and become white), Addison's disease (a disorder of the adrenal glands), and pernicious anemia (a special form of low blood count).

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You should get a throat culture, and possibly strep titers. (I'd rec. culturing household members anyway if your dd is possibly PANDAS, to check for carriers...but it'd be esp. interesting to see if you are some type of a strep carrier.)

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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.

 

Read Head,

Psoriasis is also autoimmune AND related to strep! If you do a google search under "psoriasis autoimmune strep" you'll be surprised. I cannot find the article now, but I read about a study where they tested persons whose psoriasis was flaring, and large percentage of them tested positive for strep. Now I had never heard of this until a few months ago. We are trying to figure out why we keep getting strep here. My husband has psoriasis and every now and then his face looks all read and puffy and he looks ten years older! It hasn't happend again since I found this out, but I'll be sure to send him to the doc next time it happens.

Wouldn't it be something if by trying to get help for your daughter you also find help for yourself! Amazing what mothers will do for their children, but sometimes neglect themselves. I've been to the doctor more often than ever before to try to figure out our strep situation.

Hope you find some answers soon!

Isabel

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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.

 

Read Head,

Psoriasis is also autoimmune AND related to strep! If you do a google search under "psoriasis autoimmune strep" you'll be surprised. I cannot find the article now, but I read about a study where they tested persons whose psoriasis was flaring, and large percentage of them tested positive for strep. Now I had never heard of this until a few months ago. We are trying to figure out why we keep getting strep here. My husband has psoriasis and every now and then his face looks all read and puffy and he looks ten years older! It hasn't happend again since I found this out, but I'll be sure to send him to the doc next time it happens.

Wouldn't it be something if by trying to get help for your daughter you also find help for yourself! Amazing what mothers will do for their children, but sometimes neglect themselves. I've been to the doctor more often than ever before to try to figure out our strep situation.

Hope you find some answers soon!

Isabel

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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.

As trich is believed to be related to/a subset of OCD, it certainly seems yours could be strep related. Having dealt with it for as many years as you have, however, I wouldn't want to tell you that taking an antibiotic may completely eliminate your hair-pulling behaviors. First, as someone else said, if your immune system is now out of whack, another infection could trigger you, not just strep. Secondly, OCD behaviors can become "learned," or create some significant neural pathways of their own over time, so in addition to medical treatment (possibly antibiotics, anti-inflammatories, supplements), you might want to look into Exposure Response Prevention (ERP) and/or Cognitive Behavior Therapy (CBT) to help retrain your brain in terms of how it responds to stress/anxiety.

 

As for NAC, I'm puzzled about the whole mixing it in Coke thing. Never heard of that!

 

We buy NAC at the Vitamin Shoppe, in 500 mg. capsules, completely over the counter. We take it like any other supplement. Am I missing something on my end? :huh:

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Hi fixit. I'm on the cytomel (well, it the generic now, liothyronine or something) but yeh I take it constantly but only at a small dose 10mg per day. It has really made the world of difference for me. I'll check out the time frame constraint.. didn't even know about that. thanks...

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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~

 

Red Head ~ OH. MY. GOD. I've never talked to anyone with Trich before but I seriously do the exact same thing. My top eyelashes are all but extinct, while my bottom ones are fully intact. I started wearing false lashes about seven or so months ago. Also, wearing the false lashes helps me not to pull. I've posted about it before but one of my biggest OCD symptoms is the guilt I feel when people spend money on me. To the point where I have cried when someone bought me a movie ticket. ANYWAY. If I have false lashes on the sadness of thinking of my Mom having to buy another pair greatly outweighs the urge to pull.

My eyebrows disappeared about a year ago. There's still a little bit there, some sad shell of the thick, beautiful ones I used to have before trich stole them away from me. I've taken to drawing those on. You can imagine how long it takes me to get ready in the morning between the false lashes, drawing on my brows, & putting in all of my extensions.

For me, Trich is just another facet of Obsessive Compulsive Disorder. I know that there's nothing wrong with my scalp, eyelashes, or eyebrows. They're perfectly fine. I just HAVE to pull them out. My hands hurt if I don't.

 

It's so great to hear from someone else who deals with this!!!

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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'm pretty sure we're talking about the same thing! The n-acetycysteine (or NAC) we get at The Vitamin Shoppe is 100% NAC in 500 mg. gelcaps. And yes, it smells like an open sewer when you open the bottle! ;) But interestingly enough, there's no taste, and the capsules in the open air don't seem to have a dramatic odor, either.

 

I would have to assume that, by prescription, you're dealing with a substantially heftier concentration of the stuff or something? :huh:

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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.

 

Read Head,

Psoriasis is also autoimmune AND related to strep! If you do a google search under "psoriasis autoimmune strep" you'll be surprised. I cannot find the article now, but I read about a study where they tested persons whose psoriasis was flaring, and large percentage of them tested positive for strep. Now I had never heard of this until a few months ago. We are trying to figure out why we keep getting strep here. My husband has psoriasis and every now and then his face looks all read and puffy and he looks ten years older! It hasn't happend again since I found this out, but I'll be sure to send him to the doc next time it happens.

Wouldn't it be something if by trying to get help for your daughter you also find help for yourself! Amazing what mothers will do for their children, but sometimes neglect themselves. I've been to the doctor more often than ever before to try to figure out our strep situation.

Hope you find some answers soon!

Isabel

My dd is 18 and still goes to a ped. Her ped.takes children till the age of 21. I was fortunate to find a pandas friendly dr. when she was 14.

 

 

 

 

 

 

 

 

 

 

 

 

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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?

 

I guess you just need to call to ask.

 

The other options (to start) would be a phone consult. I know Dr. K. does them. He's a ped. but I know he treats older kids (adolescents) with PANDAS. One problem with phone consults is that they aren't covered by insurance.

 

Dr. B. also sees older kids (and adults I believe) but he is an immunologist.

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I definitely believe that, like a lot of PANDAS behaviors, it can start out as autoimmune/ocd-related and then become a learned behavior even after you are "cured" or "in remission" etc.

 

I have only ever had mild trich (pulling split ends), as mine is more dermatillomania. I tend to get ingrown hairs on my arms and legs and will try to work the hairs out by squeezing, scratching, etc. This is not so much for pleasure or relief of stress, as it is relief of the pain that the ingrown hairs are causing. BUT it is considered OCD. I have also had such severe nail picking, particularly around my thumbs, that the cuticles were non-existent for the majority of my life, causing very deep ridges to form in my nails since there was such damage to the nail beds.

 

ALL of these behaviors started for me around a two year period in my life, which is the SAME period of time that I also got braces (I know now that I have severe metal sensitivity), underwent oral surgery to have 4 teeth removed (chemicals, anesthesia, breach in BBB?) and I lost my great-grandmother who had essentially been a parent to me (so, severe depression/stress/anxiety.) THEN started the chronic fatigue, acute sinus infections, repeated allergic and anaphylactic reactions to abx that were given, struggle with severe depression, mono.... the list goes on and on.

 

 

There is a lot of learning about ourselves and AHA! moments as we explore what might be going on with our children, for sure. SO much of it is inherited and so much of it has become "the norm" that it's often hard to see those things as symptoms or causes when it seems like it's just a part of who we are.

 

I rarely nail pick now and never pull split ends. I didn't treat myself and only noticed a change after changing out diet. I know, I know- I put a LOT of emphasis on changing diet, but it has done SO much for us that I didn't even expect. I never felt an "itch" that I was aware of, before picking or pulling- I just always did it, more like a tic or fidget for me. But after going gluten, sugar, and corn-free (and I believe it was the corn more than anything) I no longer pick. I will notice doing it if I have eaten out or had something questionable, so it's easy to look at my hands and see how strictly we are following our dietary guidelines set for ourselves!

 

I just find it fascinating because there is obviously a lot of truth to the BBB and to the gut-related aspect of the autoimmune system. If you follow our history, as adults, you can often see the things just unfolding in terms of - oh, I had this surgery and then this chronic symptom popped up, or I worked with this chemical and then this one popped up, I had this tooth issue.... and I started craving THIS food and this happened. But it's only clear in hindsight in this big, big overwhelming picture that takes so many twists and turns that it almost just folds in on itself and makes either perfect sense or gets so complicated that it makes none at all.

 

Okay, I'm rambling now... :)

 

My advice is to try going gluten-free, corn-free and processed-sugar-free (we use honey and that works for us) and see if you notice a change. If the meds you are on are making it worse, I would stop. The chemicals in the meds can be more aggravating and probably have some of the components of things (if food) that you are sensitive too- surely all meds have corn these days, as an example.

 

Hope some of this helps. Happy to talk via PM as well.

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