myrose

Cheri, Not sure where to ask this question. Can you delete this post after I have read your reply?? My question is how to view your sent items? Everytime I click on the sent items tab...its empty?? but I have sent PM's. Do I have to turn on a specific function to save them? The inbox is okay....just the sent items that I cannot figure out. Thanks

EAMOM...YES the urine thing! It only happened at night not during the day as much. During the day I would always have her go pee before we left home. (Hate using public bathrooms) Anyhow once we left the house and were in a store or wherever...she would say I think I have to go to the bathroom but she would always add that she was not sure and always asked me not to get mad if she didn't actually pee once we hit the toilet. (She knew I hated the public bathrooms) I felt bad after I found out it was not a curious 4 and 5 year old wanting to check out all the bathrooms! Anyhow the worst was only at night. Every time she got into bed she always got out of bed 4 to 6 times and tried to pee. It got to the point that she would bring a water bottle with her int he bathrooma and just sit on the toilet until something came out. It kept her from falling asleep and I was just about at my wits end with it!!!!! Her urine cultures always came back fine as well. Then when she was put on antibiotics (Zith) for a precautionary (until culture came back) the urine thing went away!!! It never came back after that. Still now at night if she gets out of bed to go pee...I get a little sick feeling in my stomach thinking that it is coming back. It was horrible and went on for a long time! Her neuro's nurse practioner said it was OCD related (repeated thinking she had to go) I told her she was CRAZY!!!!!!! I did not have to be a doctor of any kind to know that this was a real issue for my daughter, I was positive it had NOTHING to do with OCD. I am not saying it can not....but I just knew in our case it was not. Moms always know I guess. We went to the doctors today....did a rapid step. She was an emotional MESS! They somewhat got the stick in there but who knows where it actually touched again. She is sending it out for a culture anyhow. I did get a script for Zith...200mg for 5 days. She said to start it if she started with another fever or if her throat looked more red. (It looked real red to her today) The rapid came out negative. My daughter has complained all night that her throat is hurting worse. Even during her soccer game tonight. She wouldn't even eat or drink because she said everything (including water) burned it. She has never complained of it hurting before. Her last positive strep came without any symptoms at all. I decided to fill the script on the way home and after we returned home tonight I gave her a dose. I guess now I am scared of untreated strep and do not want to wait until Monday for the culture. Its funny though how I have a sore throat as well today. I did a rapid on myself with the home kit but to be honest I felt as thought I could not even rub that swab int he right place without tossing my cookies! My eyes started to water from the gagging and then I just had an automatic gag even when I just opened my mouth. I will try againt tomorrow. Do you rub the swab on the uvala?? Is that what that thing is called LOL Where exactly should I rub the swab? both sides as far back as I can?? At her doctor today they just pushed it back while she was crunching behind me SCREAMING! They had no view of where it touched (this I know for fact) Lastly the last ped let her swab at one appointment and commented that it would be all over the mouth if she had it. I have heard that this is completely false. I am beginning to come to the conclusion that every doctor has something different to say and their own theory for everything....JUST FABULOUS! Isn't it!!!!! Especially when you are dealing with these kinds of things!

Thanks so much everyone for all the great feedback. My daughter complained of a sore throat yesterday before bed and this morning she woke up and almost cried that it hurt so bad. I called the doctor and we are scheduled today for 1:30. I already know how this is going to go......she will refuse to open her mouth and they will want to hold her down and force her....this stresses her out to the MAX and I am probably going to tell them to NOT do it. Last month they tried to HOLD her down and got the stick in a bit, but how can one honestly know if they swabbed the correct place! I will let you know how we make out. She says already that her throat is starting to feel better but I honestly thing she says this because now we are going to the doctor. I wish there was an easier way to check for strep. The first time she was checked, they were not gentle and she literally vommited her breakfeast! That one time has ruined her of ever wanting to do the rapid test again. We are on our way now and I already have a pit in my stomach just thinking about this whole appointment!

Treating Autism with Vitamin B6 Pyridoxine & Magnesium Supplements for Autistic Spectrum Disorders © Jennifer Copley Jun 6, 2008 Studies indicate that vitamin B6 and magnesium supplements can have profoundly beneficial effects on those suffering from autistic spectrum disorders. Many studies have been carried out to examine the effects of vitamin B6 (pyridoxine) and magnesium supplements on autistic spectrum disorders. Research indicates that 50% or more of those treated make significant improvements, often within just a few days. Remarkable Results A 1968 study of 16 autistic children with serious behavioral problems found that 75% made dramatic improvements with high doses of vitamin B6, 3 of them actually speaking for the first time ever. The subjects also made better eye contact, showed greater interest in interacting and had fewer outbursts of emotion or temper. While not entirely cured, their functioning was significantly higher. Overall, studies suggest that treatment with high doses of vitamin B6 along with normal doses of magnesium may be more effective than medication for some autistic people who have difficulty controlling their behavior. Parents rate vitamin B6 and magnesium highly as a treatment for autistic spectrum disorders. Of 321 parent ratings provided to the Autism Research Institute, 50% saw improvements with vitamin B6 and magnesium supplementation, while 45% saw no effects and 5% said that their children grew worse. Magnesium on its own was not as effective, with improvements noted in just 16% of cases. How it Works It is believed that those with autistic spectrum disorders may suffer from a deficiency of vitamin B6 and magnesium, given the significant benefits achieved through supplementation. Research shows that levels of magnesium in their blood are lower than those of children without autism. Interestingly, magnesium has also proven beneficial for some children with ADHD. Safety Minor side effects of large doses of vitamin B6 may include nausea, diarrhea or hyperactivity. However, these effects are uncommon and more likely to occur only when the dose is too high or increased too rapidly. Nausea can also result from taking B vitamins on an empty stomach, so children should take vitamin supplements with meals. A very small number of children taking large doses of B6 suffer peripheral neuropathy, which causes numbness or tingling of the feet and hands. However, side effects are rare, and taking magnesium with vitamin B6 lowers the risk of them occurring. Overall, studies indicate that vitamin B6 and magnesium supplementation is safe when overseen by a family doctor or pediatrician. However, the British National Formulary warns that the effects of long-term use of high doses of vitamin B6 are not known. Required Dose Dr. Bernard Rimland of the Autism Research Institute recommends approximately 8 mg of vitamin B6 per pound of body weight each day, or 500 mg for a 60-pound child. Magnesium can be toxic at high doses and so only average dosing should be used. Parents should consult a physician to establish the correct dose for their children, as there may be other medical issues to take into consideration. Dr. Stephen M. Edelson at the Center for the Study of Autism notes that B6 and magnesium supplements should be taken in conjunction with a children’s multivitamin, as this will help in their metabolism. Also, he emphasizes that when choosing vitamins, it is important to avoid those that contain Aspartame (Nutrasweet), as this substance has been linked to neurological damage. Treating Depression and Anxiety Those with autistic spectrum disorders often suffer from depression or anxiety as well. Because vitamin B6 has the beneficial effect of increasing the levels of GABA and serotonin in the blood, it can reduce dysphoric or unhappy mental states. While these are preliminary findings and more research is needed, given that vitamin supplementation is relatively safe, B6 could be useful in treating the problematic emotional states of those who have autism or Asperger’s syndrome. Consult a Physician This article is provided for informational purposes only and is not intended to be taken as medical advice. If you are interested in using vitamin and mineral supplements to treat autism, depression or other conditions, you should consult your family physician. http://autism-therapy.suite101.com/article...with_vitamin_b6

Gee I wish there was just ONE thing that stood out from TS/TICS/Pandas. Just so one would know which path to take and what to fight for. My daughter has only been on antibiotics about 3x in her whole life so I am wondering if when we come off from topamax and things go bad again, if I should just try and fight for some antibiotics just to see if it made a difference in her. Does anyone think that at that point (if the antibiotics have a postive/dramatic effect) that I should make my way down the pandas path or is it possible that antibiotics have a positive effect on TS as well?? Cheri, has your son ever been on antibiotics? (ever saw a change during that time of any kind) This is so truly frustrating. After we finish our little program here and we come off from topamax...I am only going to have one shot at getting this right. I could NOT put her through it all again, it would kill me (not to mention her) I would call Dr. K in Chicago but I am afraid of the steroid thing..the last thing I want to do is make things worse! The antibiotics I am thinking would be the safeet way providing I keep her on her probiotics??????? Maybe at the end of the program when everything internally and all the metal is out we will not have to do anything more. Gee ya know I pray for that everynight! Thanks for all your replies and experience quotes everyone....I guess I am having one of those days/nights where I just become so angry inside and frustrated because I really just do not know what to do and quite frankly...I am sick of feeling helpless in this whole thing.

Cheri, Did your son just wake up one day with all his symptoms? Or did you notice things right from the start?

Okay now I have to ask if everyone that has replied so far has been diagnosed with Pandas???

I remember reading somewhere on the board about confessions. My daughter did a lot of this back when it all started. She used to constantly tell me all the bad things she did. They were very simple things but she would confess to everything. I am wondering now if this is a sign of Pandas/OCD/TICS.....or like all else....it happens together with everything! Thanks in advance for all the input on this.

PMOM....just realized I stated its been about a week since starting the program...we are actually starting our 3rd week today.

PMom.... Its been about a week now since we started the program. I have noticed a few things but am not sure if they are related to her treatment. The first thing was a healthy appetite...she is really eating and this makes me happy. She has been 40 pounds forever!!! Next is that the whites of her eyes seem REALLY white. Sometimes she would have the bag like effect under her eyes as well, almost like the dark circles some describe on here...haven't seen that at all. Lastly is her complexion...I can't really put my finger on the change but it looks so good. She looks maybe more vibrant (healthy) more glowing (hope that makes sense, hard to explain) Not sure if these things are from the program, but I notice every little thing and these 3 things are absouletly different. We will not know if all this will effect her tics and other issues until we wean off from topamax (yes we are still on it) We plan to come off topamx after the program is completed and also after her blood is re-checked (dry analysis) and we get the okay that it worked. I am praying everyday that it will all have a positive effect on her. The last two weeks deal with the metal extraction and that is what I really want to see....as far as the outcome afterwards. Hope all is well with you...Thanks for thinking of us and have a nice night.

ilovedogs... Thought this site may be helpful for you. How To Be Free From Depression ...without all the nasty side effects Our chemical rich modern diet with large amounts of animal protein, saturated and trans fats and an excess of caffeine and alcohol radically changes our internal ecosystem. Considering then that ‘we are what we eat’ is it any wonder that the incidences of depression are so widespread in our culture. Interestingly, many of the things that are good for your health will also contribute to a more positive state of mind, for example: daily exercise, meditation, yoga, and eating good whole nutritious foods are all recommended by the world’s leading health and nutrition experts for optimum health. These approaches to whole body health are all things that will help you to feel happier as they transform your internal ecosystem to one of optimum health, balance and harmony. This means that following the principals of healthy living laid out in the Food Matters Film can help not only your body but also your state of mind in a way that is medically documented to have results. An important nutritional detail that is often overlooked is the proliferating deficiency of Vitamin B3 (Niacin) in people who are suffering from depression. When given in sufficiently large doses, this safe and naturally occurring vitamin can have an intensely positive effect on mood, outlook, and overall mental wellbeing without any nasty side effects. The full story of how one doctor uses niacin to treat his patients for depression is detailed in the film. http://www.foodmatters.tv/depression.html

My daughter showed discharges and spikes to the right side of her brain. It looked like seizure activity but she has never had a seizure. They concluded that it could mean a predisposition for seizures to come. They suggested Topamax when the violent head bob started and in all our amazement the tics went completely away on this medicine. Its still puzzling to me why a seizure med would take it all away. Anyhow we have since learned that she has a heavy metal load in which is concentrated on the right side of her brain as well. (Same place as the discharges/spikes were) Not sure of the connection here but it seems suspicious to me. We are detoxing the metals now and then we are going to wean off the topamax and see what happens..... About the titers (I may be WRONG on this but) from what I have come to understand....everyone has a different baseline and so its hard to tell what is elevated and what is just normal for one paticular child. So maybe when you got the lower titer reading it is just his normal level???? Just a thought..... Please keep me posted as I am curious to what steps we will take next if there is no improvement after we detox and come off topamax.

Bio Chemistry home test kits Biochemistry is the study of body chemistry that feeds the physiology or function of every cell, organ and system. Ill health and disease carry an underlying disruption or imbalance in this biochemistry. If these imbalances can be determined and corrected then healthy function will be able to return. Biochemical testing can uncover nutritional deficiencies as well as measure toxic metal levels and other poisons as they affect the cells and tissues. Biochemical testing also reveals food intolerances and allergies. Once the test results are out it is easy to strategically design a customized supplement program which will over time balance out the body’s required nutrients, while avoiding the foods the body doesn’t agree with. Of course, your family doctor can run all sorts of routine tests or refer to you a consultant for specialist tests. But there are also some tests you can do yourself at home and have them sent directly to a laboratory for analysis. These DIY tests require a sample that you take yourself – for example a pinprick of blood, some hair or saliva – and come with full instructions and sample containers etc. You’ll often get your results within 10-14 days and these are usually presented in a clear and easy-to-follow format – and many come with guidelines for how to implement any recommended changes to your diet or lifestyle. Food Intolerance Home Test Kit Food Intolerance tests analyse your blood against a mix of the most common food allergens. If you are intolerant to foods your immune system produces raised levels of IgG antibodies in your blood. The Enzyme-Linked Immunosorbent Assay (ELISA) method used measures these levels. This technology is well known for its accuracy and reproducibility. The test provides a precise and detailed measurement of any delayed IgG reactions to 113 common foods (including grains, fish, dairy, nuts, meats, vegetables and fruits). Testing against such a wide range of foods provides you with a much larger selection of 'safe' foods that you can eat without worrying, enabling you to maintain a balanced and varied diet. Coeliac Home Test Kit Gluten allergy – or coeliac disease – used to be considered a rare condition, but new research suggests that 1 in 100 may be affected. Symptoms vary from digestive complaints and fatigue to headaches and anaemia, although a gluten allergy can underpin any type of unexplained ill health. Historically, diagnosis has been time-consuming and intrusive. Today, advances in medical technology mean that a simple blood or saliva test is all that’s required. Candida Anti-body Test Candida albicans is one of the many yeasts present in the large bowel, genital tract, mouth, and throat and under normal conditions is compatible with good health. It is usually kept under control by good bacteria, our immune system and intestinal pH levels. What is less well recognised is that candida can, under certain circumstances, become pathogenic, causing havoc everywhere in the body. The Candida Antibody test is performed on a saliva sample. DIY test kits are sent through the post direct to you, for you to return with your sample to the laboratory in the envelope provided. Once the sample has been taken, you simply post the test kit back to the laboratory. Hair Mineral Analysis test kits Do you ever wonder if you are getting the right nutrients? How can you tell if your multi gives you enough zinc, or whether you are actually absorbing the nutrients from your supplements? Or perhaps you may wonder whether a deficiency in chromium is contributing to a difficulty in losing weight? Most of us gauge our health by how we look and feel, but this can only tell us so much. There is a way to tell how well the body is functioning on an intracellular level without requiring invasive medical tests, and that is through the hair. While most people’s interest in their hair extends only so far as to whether they are having a 'good' or a 'bad' hair day, few know your hair can in fact reveal much about your inner health. Hair mineral analysis reveals exactly which deficiencies and excess retentions are creating antagonistic disturbances of the most fundamental nutrients your body has: at this moment. Where can I get these online? www.healthproductsforlife.com UK, EU www.realpnc.com International www.genovadiagnostics.com International http://www.foodmatters.tv/books-by-david-wolfe.html Really nice site....worth the time

Lacy I am sorry to hear about this. I hope all takes a turn for the better. I was though just curious if you have ever had an EEG on her? If so was it a 20 minute or the 24 hour w/video monitoring.

Thanks for your thoughts Peglem. You and EAMOM made some really good points and helped me understand alot of the confusion I was having with the paper.

I guess maybe a way to possibly know if you should look into Pandas, would be if he responds well to the antibiotics??? Then again from what I have read on here, it may depend on the type of antibiotic, the doseage and the amount of time on it?? I am sure someone with experience will chime in. We are not on antibiotics at this time and also not sure as to look into Pandas more or not. Please do post your updates though I would really like to keep up to date with this post and our progress.

Nan I am so happy for you I could actually feel my tears coming on. I hope you remain like this forever! God Bless

Cheri I am truly sorry for the confusion here. But I didn't word the title, its the name of the paper I quoted, I just copied it from the subject line and placed it in my postings subject line. Also when I quoted about finding the info on DHEA on lattitudes....I did clarify which info....my posting stated that the info about depression and DHEA came from latitudes. Again I am sorry....I just found it intreresting about the DHEA and wanted some thoughts or possibly some input if someone had experience with it.

WHOA.....I never said I got the article from latitiudes....I included the link at the bottom of my post. My second post about DHEA is the info I found on latitudes and that is what I stated. And I most certainly never posted about children taking anything. BOY! I am leaving this post alone now......I was just trying to see what everyones thoughts were about the info I posted. That was it. Never meant to ruffle all the feathers here.

Thanks for the info Cheri....I actually got the info part on the DHEA (helping with depression) from this site (lattitudes). Interesting....

Found this interesting as well.... DHEA In recent research, DHEA was successful in reducing depression symptoms in about 50% of participants. DHEA is a steroid hormone made by the adrenal glands, and is a precursor to testosterone and estrogen. DHEA supplements are available over the counter. A vegetarian form, from wild yams, is produced by Natrol. DHEA production dwindles with age, beginning in early adulthood. Look for certified sources. Long term us of DHEA has not been evaluated. It has not been recommended for severe depression. It is suggested that the treatment be considered for those who do not respond to other therapies or who are reluctant to take standard antidepressants. (I guess better than an SSRI if it works) Anyone have any experience with DHEA????

Hey EAMom, Thanks for sharing your thoughts...when I first read it I thought I read it wrong and had to go back and read it again! I am still deciding what we will do long term or in what direction to go, so of course I am reading EVERYTHING! and EVERYHING! I never want to look back and say..."I wish I knew about that then" just like I do now when I think of that day I let them give her all those vaccinations in one day!!!!!!! If I only knew then, what I know now. Hope your daughter is doing good, and that you and Buster had a nice weekend! (Happy LATE Halloween) we made it though the whole day without any candy.....I would never deprive her of trick/treating so I let her and we had a blast. She LOVES to buy things at the store, so when we returned home I bought all her candy from her. She happily gave it ALL up for $10.00. I then sent it all to my husbands work to leave in the lunch room area. So aside from a cupcake at school, and some organic all natural lolipops....we had a nice halloween! CANDYFREE style

Hello Faith, My posting was just something that I came across that I have never heard before. I was hoping someone would comment on the supplement or even their thoughts as to if they believed it could help. You never know....someone's little theory one day may just turn out to be the answer.....I like to read everything. It seems the big guys that have the funds and such to do the studies, haven't come up with much either. If I read something that competely made sense to me....I wouldn't care who wrote it. So I am sorry....I really did not mean everyone to go out and buy the supplement, just wanted to pass and share thoughts I guess. That is I guess why I come here....to share, to read, to pick it apart, to find a missing clue, you know what I mean.

A Potential Explanation of Tourette’s Syndrome (Some Potential New Support: Biological Psychiatry 2005 (March 15); 57: 667-673: The authors found increased levels of interleukin-12 and tumor necrosis factor alpha in their subjects. DHEA decreases TNF alpha (Crit Care Med. 2001 Feb;29(2):380-4) and decreases interleukin-12 (Aliment Pharmacol Ther. 2003 Feb;17(3):409-14). I suggest it is possible that these findings may be explained by low levels of DHEA, or interference of available DHEA, in Tourette's syndrome.) This is designed for consumption by people who have knowledge and/or experience with Tourette’s syndrome. (If this interests someone without these connections to Tourette’s syndrome, I suggest some prior reading.) With that in mind, I can make this very brief. My work, copyrighted 1985, suggests that the major hormone of the adrenal glands, dehydroepiandrosterone (DHEA), is necessary for proper growth and development of all tissues, and maintenance, thereof, following development, especially the brain. The other major hormone of the adrenal glands, cortisol, I suggest works to antagonize the effects of DHEA. Therefore, I would label cortisol the primary "anti-DHEA" hormone. Currently, there is much study of the connection of cortisol and DHEA, but the work is backwards to my idea. That is, searches of the medical literature will produce much research on DHEA as the major "anti-cortisol" hormone. (In the medical literature, the general term, "glucocorticoid" is often used in the place of "cortisol," so you might find references to DHEA as an "anti-glucocorticoid," if you pursue this.) While this is important to me and my copyright, I mention this difference only to demonstrate that a number of investigators think the connection of DHEA and cortisol is important. It is important to my explanation of Tourette’s syndrome. There are a number of reports in the literature that connect increased cortisol with Tourette’s syndrome (TS). No one has studied the levels of DHEA in this syndrome, so this is my hypothesis regarding TS and DHEA. Just below is a recent citation that sums up the connection of cortisol and TS. For those without the knowledge, you should know that cortisol production, by the adrenal glands, is stimulated by a cascade of molecules. Corticotropin-releasing factor (CSF) stimulates the release of adrenocorticotropin hormone (ACTH), which travels to the adrenals and mainly stimulates cortisol production. (ACTH does stimulate some production of DHEA, prolactin is more important than ACTH; more on that below.) The important statement in this citation is: "The TS patients had significantly higher levels of CSF CRF than both the normal controls and the OCD patients." Biol. Psychiatry 1996 May 1; 39(9): 776-783 "Elevated cerebrospinal fluid corticotropin-releasing factor in Tourette’s syndrome: comparison to obsessive compulsive disorder and normal controls" "Stress- and anxiety-related fluctuations in tic severity are cardinal features of Tourette’s syndrome (TS), and there is evidence for involvement of noradrenergic mechanisms in the pathophysiology and treatment of the disorder. To examine further the pathobiology of this enhanced vulnerability to stress and anxiety, we measured central activity of corticotropin-releasing factor (CRF) in patients with TS and the related condition, obsessive compulsive disorder (OCD). Lumbar cerebrospinal fluid (CSF) was obtained in a standardized fashion for measurement of CRF from 21 medication-free outpatients with TS, 20 with OCD, and 29 healthy controls. The TS patients had significantly higher levels of CSF CRF than both the normal controls and the OCD patients. However, there was no difference in CSF CRF between the OCD patients and the normal controls. Group differences in CSF CRF were unrelated to current clinical ratings of depression, anxiety, tics, and obsessive compulsive behaviors. Although the functional significance of this finding remains to be elucidated, these results are consistent with the hypothesis that stress-related neurobiological mechanisms may play a role in the pathobiology of TS." The investigators, above, also stated that "Stress- and anxiety-related fluctuations in tic severity are cardinal features of Tourette’s’ syndrome..." Cortisol is known as the "stress hormone." Therefore, I deduce that cortisol has negative effects in TS. It is known that cortisol, especially over lengthy time, is a neurotoxin; cortisol is bad for the brain. It has also been found that: "The TS patients secreted significantly more ACTH than the normal controls in response to the stress of lumbar puncture." Biol. Psychiatry 1994 Jul; 36(1): 35-43 Remember, CSF stimulates ACTH, which stimulates cortisol. Now, my basic principle, that DHEA is the positive hormone and cortisol is its antagonist, suggests that DHEA should have positive effects against stress and anxiety. This has recently been studied and supported. "In conclusion, the results presented here show DHEA to be effective as an antidespair agent in rats with both high anxiety and despair." Physiol. Behav. 1997 Nov; 62(5): 1053-1057 DHEA may alleviate the stress in TS by increasing the ratio of DHEA to cortisol. A number of drugs have been used in Tourette’s syndrome. However, over time these prove to actually increase tics. I suggest that the initial success of these drugs, and their subsequent failure, is due to positive, then negative, effects on DHEA production. Mov. Disord. 1995 Nov; 10(6): 791-793 "Tardive tourettism after exposure to neuroleptic therapy" "A case of neuroleptic-induced adult-onset tardive tourettism is presented with video documentation. After prolonged neuroleptic therapy, the patient developed motor and vocal tics at 36 years of age. The tics were identical to those seen in childhood-onset Tourette’s syndrome. These cases are rare and have been considered by some to represent tardive akathisia" DHEA is significantly low in schizophrenia (Biol. Psychiatry 1973; 6: 23). (Please read my explanation of schizophrenia.) Some of the drugs used to treat schizophrenia have been useful in the treatment of TS. The drugs used to control schizophrenia, I suggest, actually exert their effect by stimulating DHEA production. That is, "...antipsychotic potencies of most neuroleptic drugs closely correspond to their prolactin-releasing potencies at low doses..." (Biol. Psychiatry 1990; 27: 1204). Prolactin is highly effective at stimulating DHEA production, and, in fact, may be specific for stimulating DHEA (Am. J. Ob. Gyn. 1987; 156: 1275, and Endocrinology 1985; 117: 1968). One of these drugs, haloperidol, is effective in TS (first quotation, below). However, prolonged use of haloperidol has the negative side effect of increasing tics (second quotation, below). Am. J. Ment. Retard. 1997 Mar; 101(5): 497-504 "Tourette’s syndrome associated with mental retardation: a single-subject treatment study with haloperidol" "A Tic Checklist and direct observation tic measurement procedure were developed for the assessment of Tourette’s syndrome in individuals with mental retardation. Using a single-subject reversal design, we applied this assessment method to the evaluation of haloperidol treatment for a subject with Tourette’s syndrome and severe mental retardation. Relative to baseline, haloperidol 10 mg/day produced decreases of 66% in simple motor tics, 46% in complex motor tics, 45% in simple vocal tics, and 50% in complex vocal tics. Improvement was also seen in careprovider ratings of tic severity, hyperactivity, and compulsive behaviors." Aust. N. Z. J. Psychiatry 1996 Jun; 30(3): 392-396 "Tics status" "OBJECTIVES: To describe two patients with tics status, propose a definition of this syndrome and draw attention to its clinical significance. METHOD: Two patients suffering from Tourette’s Syndrome who had developed episodes of continual motor tics that lasted from minutes to hours, were non-suppressible and intruded into normal functioning, were treated with an increase in the dose of haloperidol, in one case with the addition of clonazepam. RESULTS: The offset of the episodes was gradual and the tic disorder was worse after the episodes. One patient had further spontaneous episodes of tics status. CONCLUSIONS: The recognition of tics status has implications for the management as well as our understanding of the pathobiology of tics and Tourette’s Syndrome. The definition of tics status should be standardized." Nicotine has also been found to be useful, again for a limited time, in Tourette’s syndrome. Smoking, i.e., nicotine, increases the production of DHEA. J. Steroid. Biochem. Mol. Biol. 1993 Aug; 46(2): 245-251 "Cigarette smoking is associated with elevated adrenal androgen response to adrenocorticotropin" "Cigarette smoking alters the pattern of endogenous steroid levels. We examined this phenomenon in two separate male groups. Group A consisted of 189 dyslipidemic men participating in the Helsinki Heart Study and group B of 100 men including patients with heart disease and healthy controls. The subjects in the latter group underwent ACTH-testing. In group A, smokers had significantly higher basal androstenedione and dehydroepiandrosterone sulfate (DHEAS) levels and androstenedione/cortisol ratios than nonsmokers. Mean concentrations of cortisol, dehydroepiandrosterone (DHEA), androstanediol glucuronide, testosterone, and sex-hormone binding globulin (SHBG) did not differ between smokers and nonsmokers. In group B, smokers had lower high density lipoprotein (HDL)-cholesterol and apolipoprotein AI and higher triglyceride levels than nonsmokers. Basal androstenedione and ACTH stimulated androstenedione and DHEA concentrations were higher in smokers. No significant differences were found in basal insulin, SHBG, estrone, estradiol, testosterone, free testosterone, and dihydrotestosterone concentrations between smokers and nonsmokers. These results suggest that smoking decreases the activity of either 21- or 11 beta-hydroxylase in the adrenal cortex, which results in increased secretion of adrenal androgens." Psychol. Med. 1997 Mar; 27(2): 483-487 "Differential effects of transdermal nicotine on microstructured analyses of tics in Tourette’s syndrome an open study" "BACKGROUND: The treatment of Tourette’s syndrome (TS) is often unsatisfactory. However, there is some evidence that transdermal nicotine patch (TNP) application may improve tics of nonsmoking TS patients who are refractory to haloperidol treatment. METHODS: In this open study we applied two 10 mg TNP for 2 consecutive days to four TS patients whose symptoms were not controlled by haloperidol and to a never-medicated TS patient, all of whom are non-smokers. The Yale Global Tic Severity Scale (YGTSS) and a quantified video-taped micro-structured analysis of tics (head-shake tics, eye-blinks, vocal tics, facial grimace and other body tics) were both carried out to assess the change after the application of TNP. RESULTS: TNP application significantly reduced the YGTSS by an average of 50%, with no reported side-effects, for up to 4 weeks but not 16 weeks, as compared with TNP-free period. Consistent with these results, the total counts of tics also showed a significant decrease for up to 4 weeks after the TNP application. CONCLUSION: TNP application differentially affected individually quantified tics, which may suggest a differential role of nicotinic receptors in the generation of different tics." Haloperidol and nicotine both reduced tic severity. However, both of these drugs were useful for a limited time. My explanation of Tourette’s syndrome is that these individuals produce more cortisol than they should, and are limited in their ability to produce DHEA. If this is true, then the use of these two drugs, that stimulate DHEA production, may overwhelm the ability of the adrenal glands to produce DHEA. That is, they stimulate DHEA for some time, then the ratio of cortisol to DHEA may actually increase. The tics that haloperidol eventually causes may actually result from reduced availability of DHEA for certain parts of the brain that cause the tics, characteristic of prolonged haloperidol use. I have developed an explanation of epilepsy that suggests that epileptic seizures occur to increase DHEA. Now, in the case of haloperidol, only certain parts of the brain may be affected, and the tics may represent small seizures, the purpose of which is to stimulate DHEA. It is known that tics are sometimes misdiagnosed as seizure activity. (You may read my hypothesis of epilepsy.) (My work also suggests that the addiction of smoking is due to the DHEA stimulated by nicotine, in individuals who can continue to produce DHEA with nicotine.) In my study DHEA, I have found references that show that DHEA is low in childhood, increases through adolescence to a peak in young adulthood, around age twenty to twenty-five. Now, this means that DHEA increases from childhood through young adulthood. This period of increasing DHEA availability should reduce the symptoms of Tourette’s syndrome in some individuals, assuming that undue stress is not experienced (increased cortisol). This is supported. J. Psychol. 1997 Nov; 131(6):615-626 "Psychophysiological aspects of Tourette’s syndrome" "Tourette’s syndrome (TS), once considered a rare disorder, has been investigated extensively in the last two decades. It is inherited, usually beginning in childhood, and waxes and wanes, usually decreasing in frequency and severity in adolescence and early adulthood. Pharmacotherapy is the usual treatment approach, reducing frequency and severity of symptoms, but it is not a cure and often has side effects. Psychological help for people with TS and their families may be needed for this complex disorder." It is my hypothesis that Tourette’s syndrome results from too much cortisol and too little DHEA. I suggest that children with TS might benefit from supplemental DHEA. http://www.anthropogeny.com/A%20Potential%...%20Tourette.htm

PANDAS and PITAND: Reality or New Panacea – Elena Koles, MD In our medical practice, before applying any new testing modality or treatment, we use common sense and do not “buy” new ideas before studying their basis and logic. When something new comes onto the health ‘market’, either a medication or technique, it should be analyzed and evaluated. If you use this approach, the number of drug interactions and side effects can be minimized for most patients. Since Leeuwenhoeck's development of the microscope and the Koch-Pasteur germ theory, people have looked for internal unseen agents that spread through the human population and cause disease. Today scientists know much more about the complexity of microbial symbiosis with humans and the antibody response known as the "humoral" arm of the immune system. But many physicians are still looking for primitive explanations for all health problems as an “internal enemy” with most illnesses, ranging from stomach pain to cancer, atherosclerosis and even schizophrenia. This simple idea can be easily understood by the general population and provides an easy treatment solution – antibiotic therapy. In 1998, a new illness called PITAND (Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders) was suggested for neurological and behavioral disorders that have no clear explanation of their etiology and pathogenesis. Many parents have been told that the autism seen in their child might be a manifestation of so called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci). These parents are told that antibiotics are appropriate and should be used as a long term treatment. Both PANDAS and PITAND are very rare conditions and have specific clinical and diagnostic criteria. associated with them. In late 1990s, PANDAS was diagnosed in children with obsessive compulsive disorder (OCD) and tics. Children with PANDAS are clinically identified by dramatic, "overnight" onset of symptoms, including motor, facial or vocal tics, obsessions and/or compulsions, although this has not been consistent in all studies. Sudden onset should raise suspicion, but note that testing titers can help confirm the diagnosis if the titers are high for 2 tests taken 4 to 8 weeks apart. PANDAS diagnostic criteria (1) Current or past presence of symptoms (DSM IV) of Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism or Autistic Spectrum Disorder, and Anorexia Nervosa. (2) Symptom onset between 18 months of age and puberty. (3) Episodic course of symptom severity characterized by the abrupt onset of symptoms and/or frequent, dramatic symptom exacerbation. (4) Symptom exacerbation associated with beta-hemolytic streptococcal infection. (5) Presence of abnormal neuropsychiatric examination, including motor hyperactivity, adventitious movements, tics (6) Measurable clinical improvement following "steroid burst". Disqualifying factors (absolute): Presence of symptoms before 1 year of age. Disqualifying factors (relative): Confirmed diagnosis of Autism and/or Autistic Spectrum Disorder in sibling(s). PITAND diagnostic criteria (1) At some time in his or her life, the patient must have met diagnostic criteria (DSM IV) for one of the following neuropsychiatric disorders: Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism, (or Autistic Spectrum Disorder). (2) Pediatric onset: symptoms of the disorder first become evident between 18 months of age and the beginning of puberty. (3) The onset of clinically significant symptoms must be sudden (with or without a sub clinical prodrome), and/or there must be a pattern of sudden, recurrent, clinically significant symptom exacerbation and remissions ("wax and waning pattern"). Onset of a specific episode typically can be assigned to a particular day or week, at which time symptoms seem to "explode" in severity, and they are frequently associated with an infectious episode. (4) There must be evidence of an antecedent or concomitant infection. Such evidence might include a positive throat culture, positive streptococcal serologic findings (anti-streptolysin O or anti-streptococcal DNAse , or a history of illness (pharyngitis, sinusitis, infection with Epstein-Barr virus, influenza, recurrent otitis media), and possibly recent exposure to childhood vaccination. (5) Presence of auto antibodies (anticardiolipin, antineuronal, antibody/antigen complexes, etc.) (6) During the exacerbation, the majority of patients will have an abnormal neuropsychiatric examination, frequently with hyperactivity and adventitious movements ("choreiform" movements). (7) Measurable clinical improvement following "Steroid Burst". Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. In fact, the average grade-school student will have 2-3 strep. throat infections each year. PANDAS is to be considered when there is a very close relationship between the abrupt onset or worsening or OCD and/or tics, and a preceding strep. infection. If strep is found in conjunction with 2-3 episodes of OCD/tics, then it may be that the child has PANDAS. The clinical value of PANDAS rests on the promise of effective antibiotic treatment, and here the results of controlled trials have been, at best, inconclusive. Penicillin prophylaxis did not prevent exacerbations of tics and OCD, but it did not prevent streptococcal pharyngitis either (1). For now, the most compelling case for the value of antibiotic treatment comes from an uncontrolled study of 12 children who met PANDAS criteria and improved with antibiotics (2), and the testimonials of clinicians and investigators who have seen tics and OCD symptoms disappear in individual children treated with antibiotics. But clinical observations of this sort, convincing as they might appear, mislead at least as often as they point to useful information. Clinicians who have given antibiotics to children who meet PANDAS criteria have not been uniformly impressed (3). No wonder, because, please note, PANDAS is considered to be an autoimmune disorder, not an infection. The PANDAS theory is only a hypothesis, and a highly controversial one, that has yet to be proven. It has engendered the use of controversial, dangerous and unproven treatment methodologies for children with tics and OCD (obsessive compulsive disorder), such as intravenous immunoglobulin (IVIG), plasma exchange, and the use of prophylactic antibiotics for the prevention of streptococcal infections. The Advisory Boards of the Tourette Syndrome Association do not currently recommend these procedures, and the NIH has also issued a warning about the use of these unproven methodologies. The recent study does not support the hypothesis that PANDAS and Tourette syndrome are secondary to antineuronal antibodies (4) The controversial and still highly contentious concepts of PANDAS and PITAND were introduced by A. J. Allen and S. Swedo in the late 1990s. Swedo suggested that these children represent a unique subgroup defined by: (1) OCD and/or a tic disorder; (2) onset between age 2 and the beginning of puberty; (3) episodic course characterized by abrupt onset of symptoms or dramatic symptom exacerbations; (4) temporal association with infection; and (5) neurologic abnormalities (adventitious movements) during symptom exacerbations. They postulated that in susceptible children, an autoimmune response targeted to neurons is triggered. Certain cases of anorexia nervosa, psychotic symptoms following some viral disease and a few cases of Autistic Spectrum Disorders have all been linked to an infectious agent, and their pathophysiology appears compatible with PANDAS and PITAND syndromes. The test used for PANDAS confirmation is an elevated anti-streptococcal antibody titer (ASO or AntiDNAse-. But this just means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. Please note, that other symptoms experienced by children with PANDAS should be considered only in conjunction with their OCD and/or tics: ADHD symptoms (hyperactivity, attention deficit, fidgety) Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers) Mood changes (irritability, sadness, emotional lability) Sleep disturbance Night- time bed wetting and/or day- time urinary frequency Fine/gross motor changes (e.g. changes in handwriting) Joint pains If diagnosis is confirmed then a battery of appropriate treatments should be applied. Some of them are not efficient. Thus, the NIH does not recommend preventive tonsillectomies for children with PANDAS, as there is no evidence that they are helpful. The fact that the "steroid burst" tend to control some symptoms of PANDAS brings it into consideration as a possible treatment for PANDAS. Since short-term steroid treatment only controls the symptoms temporarily and its prolonged use may have rather serious side effects, corticosteroids have not been and should not be used in PANDAS. Antidepressants - SSRIs ( Lexapro, Prozac, Luvox, Paxil, Zoloft, etc.) have been frequently prescribed to children with PANDAS syndrome. Few parents understand that these medications are not recommended by manufacturer for children and particularly with PANDAS and are considered "off label" use. In addition, very serious side effects have recently prompted FDA to require so-called "black box" warning to be displayed on the packaging of these drugs. Considering that benefits of SSRIs have not been proven in patients with PANDAS, and that these medications can have serious side effects, their frequent and prolonged use in PANDAS should be seriously questioned. Plasma exchange and IVIG have both been shown to be effective for the treatment of severe strep. triggered OCD and tics, and there were some benefits with these interventions. However, there were a number of side-effects associated with these treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedures such as these. Thus, these treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. Antibiotics have been the mainstay of PANDAS and PITAND treatment. Unfortunately, patients with pronounced behavioral symptoms (severe separation anxiety, i.e.) are less likely to be relieved of all of their symptoms following the use of antibiotics. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics may treat the sore throat or pharyngitis caused by the Strep by getting rid of the bacteria. However, in PANDAS, antibodies produced by the body in response to the infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS and PITAND. At this time, there is not enough evidence to recommend the long-term use of antibiotics (5) Until their usefulness is determined, antibiotics should NOT be used as long-term treatment for OCD and tics. It is even more questionable for Autism. It is well known that even short-term usage of antibiotics can trigger many severe health problems including allergy, asthma, eczema, diabetes, etc. In our practice, we have one boy who developed autism after aggressive antibiotic treatment of his earache considered by his paediatrician as an infection. Concerns have been raised that PANDAS may be overdiagnosed, as nearly a third of patients diagnosed with PANDAS by community physicians did not meet the criteria when examined by specialists, suggesting that a diagnosis of PANDAS is sometimes conferred by community physicians without scientific evidence (6). The result of an initial study with 37 children found no effect of antibiotic treatment on infection rate, obsessive-compulsive symptoms or tic symptom severity (7) The methods in the latter study have been criticized (8). Again, real PANDAS is very rare. In one pediatric practice, among 4000 children with streptococcal infection seen over a 3-year period, only 12 (0.3%) had PANDAS (9). How can it be that most autistic children (1 in 150 American children) get this rare entity and are recommended long-term antibiotic treatment for Strep without ever having had an infection in their lives? From our point of view, the infectious agent may be a trigger for Autism in susceptible individuals. This agent (mycoplasma, mycobacteria tuberculosis, borrelia, etc) should be carefully identified, and only then should the appropriate treatment for it be applied. All children should be tested for parasitic infestation, including exotic protozoa and fungi. The treatment should be highly individualized and carried out with care. http://www.u-ok.net/Pandas.html