Ronnas

I took Kurt to a reflexologist for the second time this week as I wanted to see if the improvement I saw last time was a fluke. Well again he had just a great day...very clam and relaxing. I took Kurt for cranial/sacral therapy today and a strange thing happend on the car ride home...he said "Mom, our phone number is ***-****, right?"...I was floored...this is the first time he has EVER said our phone number without help! It could be a coincidence but for now I am sticking with the reflexology and cranial/sacral therapy once a week for the next few months. I will post if I see further improvements. I would highly recommend trying reflexology...Kurt finds it very relaxing and he REALLY liked the cranial/sacral therapy. Ronna

Great thread Chemar!

D1: Eur Neurol. 2002;48(1):49-51. Related Articles, Links Late-onset PANDAS syndrome with abdominal muscle involvement. Martinelli P, Ambrosetto G, Minguzzi E, Battaglia S, Rizzo G, Scaglione C. Institute of Neurology, University of Bologna, Italy. pmartin@neuro.unibo.it Publication Types: Case Reports PMID: 12138313 [PubMed - indexed for MEDLINE] Dara, I came across this tonight and I thought you might be interested. If you go to PubMed (link is on BrainTalk...under the "Google search) you can order the whole article online...

I have posted more recent PANDAS articles at the Tourette Syndrome forum at braintallk for anyone intersted...

Susanna, My son swallows pills easily so I give him the antibiotics as a capsule. I am not sure how old your son is but it is really nice if they can swallow pills. My son has been able to do this since right before he turned five. Many have suggested practicing with M&M's first, taking a drink from a straw to help swallow the pill, and my own personal thing is to NOT teach your kids to tip their head back. As for liquid, the only thing I can think of is to give it "in the cheek" rather than directly on the tongue or directly in the mouth. I am a nurse and this is how we give meds. I have a nephew who REFUSES to take anything by mouth from his mom or dad but easily does it for me. It has become a "habit" I think for my nephew to fuss for his mom...I am pretty fast and matter of fact. From the time they are young don't announce they are getting any medicine...a surpise "attack" works best...be as fast as possible, no nonsense and QUICK. This is easily said by me though as I am an RN and believe me nurses don't really fool around with much fussing when you have a bunch of kids to give meds to. Best of luck with the NIMH...I found them very good to talk to! Take Care, Ronna

Susanna, I am glad you went and had the strep test done. It is important for you to find a doctor knowledgeable about PANDAS. I think you have been very lucky to have evidence of a positive throat swab in relation to the tics. I would contact the NIMH as they do have current research studies ongoing right now that your son may qualify for depending on where you live. I have corresponded with Dr. Swedo, and Dr. Garvey at the NIMH...as well as a few more doctors there and found them to be supportive and they absolutely wanted to help...I almost fell out of my chair the day Dr. Garvey phoned me. Just look under "Current PANDAS research" to contact the PANDAS group at the NIMH. http://intramural.nimh.nih.gov/research/pdn/web.htm A thread I started on the "old braintalk" has alot of good information about PANDAS and would be a good place to start reading BEFORE you see your doctor again. http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html Below is some information that I think is very important which I got from The Canadian Medical Association Journal...it is a very good and should be posted in every doctors office! CMAJ November 13, 2001; 165(10) Is obsessive-compulsive disorder an autoimmune disease by, Paul D. Arnold and Margaret A. Richter. http://www.cmaj.ca/cgi/content/full/165/10/1353 They have illustrated a diagnostic algorithm which is based on the literature summarized and their own clinical judgement which is as follows: Preadolescent child with sudden onset or exacerbation of OCD symptoms or tics. Screen for comorbid symptoms: separation anxiety, emotional lability, ADHD. Take medical history, focusing on a history suggestive of streptococcal infection and neurological problems. Perform mental status examination. Perform focused physical examinaiton looking for signs of streptococcal infection and abnormal movements (e.g., tics, choreiform movements). Take family history, screening for OCD or tic disorders as well as rheumatic fever or Sydenham's chorea. Is there evidence of a streptococcal infection temporally associated with symptom onset or exacerbation? OR is there a strong family history of rheumatic fever? NO: Initiate, augment or switch standard treatments (e.g., CBT or SRI's for OCD) according to established guidelines. YES: Take a throat swab and send for culture. Perform ASO titer. (an ASO titer is recommended because an antiDNAse B titer is expensive and not widely available in Canada). Is the throat swab positive? NO: Initiate, augment or switch standard treatments according to established guidelines. YES: Treat infection with antibiotics. (and initiate, augment or switch standard treatments according to established guidelines. Monitor symptoms over time Treat recurrent infections promptly with antibiotics Repeat ASO titers (suggest every 3-4 weeks for an additional 1-2 titers) and observe trends. Is there evidence of repeated exacerbations of symptoms associated with either increassed titers or clinical evidence of streptococcal infections? NO: Initiate, augment or switch standard treatments according to established guidelines. YES: Consider switching or augmenting initial psychotropic medications. Consider antibiotic prophylaxis in consultation with a pediatrician Consult with a child psychiatrist or neurologist or refer to the NIMH PANDAS study. I hope your son shows some improvement with the antibiotics. Take Care, Ronna

Susanna, Have you read much about PANDAS? If your son's tics began with a strep infection last March then he may be a child with PANDAS. We have found with our son that any infection (viral or bacterial) tends to set him off. I have read that once the immune system is primed to overreact it will. For example, one of my son's worst setbacks in the last few years was when he had the chicken pox. Overall, it would not hurt to get a throat swab done if he has suddenly developed tics again. My son never had any classic symptoms of strep...we now believe he had strep in his sinuses...anyways, strep can present very differently from kid to kid. I think it is better to be safe and have the throat swab done. At one time we had the whole family swabbed...my youngest daughter had no symptoms and came back positive for strep...my second son had all the symptoms of strep and came back negative...go figure... Ronna

I have been reviewing some of the most recent medical journal articles regarding PANDAS. I thought this one had some good information. Although this forum is really focused on alternative therapies I think that parents need to be aware of PANDAS as well. My son straddles a dx of PANDAS and sydenham's chorea. If someone wants the whole article they can contact me via lattitudes or braintalk. I have only included parts the Introduction and Discussion as the article is very long. J Neuropsychiatry Clin Neurosci 16:252-260, August 2004 A Possible Association of Recurrent Streptococcal Infections and Acute Onset of Obsessive-Compulsive Disorder INTRODUCTION Rheumatic fever is an immunologically mediated disease that follows infection by group A ß-hemolytic Streptococcus (GABHS). In rheumatic fever, antibodies generated against GABHS cross-react with the heart, joints, skin, and other sites, inducing an inflammatory, multisystem disease. Brain tissue-specific antibodies have been demonstrated in a subset of children with Sydenham chorea (a component of the Jones criteria for the diagnosis of rheumatic fever), and most Sydenham chorea patients manifest obsessive-compulsive symptoms very similar to those in traditional obsessive-compulsive disorder. The parallels drawn from the paradigm of Sydenham's chorea to Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is an area of active controversy. Newly emerging information on the role of GABHS superantigens in the pathogenesis of rheumatic fever is of particular interest. In this article, we review the microbial characteristics of GABHS and the subsequent immune responses to GABHS as a possible etiology of PANDAS. Published evidence indicates a possible etiological link between GABHS infection and a subset of obsessive-compulsive disorder (OCD),13–16 Tourette's syndrome (TS),13,16–19 and autism,20 and suggests that antibodies that develop against a subgroup of Streptococcus pyogenes cross-react with human brain tissue in genetically susceptible children. Swedo et al. coined the acronym PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) to represent these disorders. The PANDAS criteria are: 1) presence of OCD or tic disorder, 2) onset between age 3 to puberty, 3) episodic course with dramatic symptom exacerbations, 4) association with GABHS infection, and 5) motoric hyperactivity.21 The PANDAS concept has recently been reviewed by Murphy et al.22 and Swedo et al.23,24 and challenged by others who conclude that currently there is insufficient evidence to establish an association between GABHS and PANDAS.25–28 These authors argue that there is not clear-cut evidence for concordance of acute rheumatic fever (ARF) and PANDAS, no evidence of an increased incidence of ARF among family members of PANDAS cases, and no clear-cut association of PANDAS with GABHS infections. Further, they argue that antineuronal antibodies have not been found in all TS cases and antineuronal antibodies have been found in a substantial number of control subjects. They also point out that majority of TS cases do not meet PANDAS criteria and doubted if there is room to implicate nongenetic factors as being significant in the pathogenesis of TS. The mechanism for anti-GABHS antibody cross-reactivity to brain tissue is attributed to molecular mimicry. Susceptibility to instigating an autoimmune reaction in response to an environmental trigger (GABHS or possibly other infectious agents) has been ascribed to a genetic predisposition. Genetic and environmental influences involved in the pathophysiology of rheumatic fever (RF) and PANDAS have not been elucidated, however, recently published papers provide intriguing clues (see below) that suggest that streptococcal superantigens play a crucial role. Although the significance has been disputed, elevated levels of a unique surface alloantigen on B lymphocytes have been suggested to be characteristic in RF and PANDAS subjects (see below). Zabriskie et al. raised monoclonal antibodies against this alloantigen by immunizing mice with B cells from a patient with RHD.8 One of these monoclonal antibodies, D8/17, has been isolated in an effort to detect individuals at risk as well as individuals who manifest active illnesses. Children who are susceptible to or who have early onset OCD, TS and autism appear to be vulnerable or tend to overexpress this lymphocyte marker in their B cell population. The goal of the present paper is to review: 1) microbiologic characteristics of GABHS, 2) immune responses to GABHS as one of the possible etiologies of PANDAS and other neuropsychiatric disorders, and 3) the D8/17 antibody as a potential marker of disease and/or risk for development of PANDAS. DISCUSSION Although the significance of D8/17 testing for OCD is in question, the relationship between recurrent streptococcal infections and development of sudden onset of OCD in a subset appears firmly established.(44) Streptococcal antibodies from SC subjects (and by inference OCD) that bind to basal ganglia but not to the rest of the brain tissue71 support above findings. Currently, superantigens from a specific streptococcal strain or strains are believed to play a crucial role in the expansion of specific clones of T cells that target a specific epitope on the M protein as well as host tissue (molecular mimicry)48,49 Regarding the D7/18 monoclonal antibody, eight recent studies investigating D8/17 positivity on the surface of B cells demonstrated elevated D8/17-positive cases in a subset of neuropsychiatric disorders that includes PANDAS, SC, OCD, TS, trichotillomania, tics, autism, and anorexia nervosa . The observation that obsessive compulsive (OC) symptoms from SC are indistinguishable from OC symptoms found in chronic childhood OCD cases72,73 has led Swedo et al. to hypothesize that SC and OCD share the same or similar pathophysiology or etiology.73 Sydenham's chorea (SC) has known pathologic findings (that date back nearly a century) in the corpus striatum,74 thus the etiology of OCD was presumed to follow corresponding anatomical and/or pathophysiological changes. Swedo et al. have subsequently conducted a series of studies that have redefined a subset of OCD, with an increased rate of OCD in first-degree relatives of PANDAS cases than those reported in the general population,75 which are distinct clinical characteristics21 and laboratory findings. Specifically, OCD children were found to have an expanded subset of B lymphocytes staining positive for the D8/17-specific antigen (Table 3), increased antineuronal antibody titers (Table 2), and enlarged corpus striatum.76 The increased basal ganglia size found in the study was similar to that found previously for subjects with SC compared with normal subjects.77 Regarding the relationship between PANDAS and GABHS infection, a recent study reported that an association between antistreptococcal antibodies and OCD/tics might have been confounded by the presence of attention deficit hyperactivity disorder (ADHD).27 The authors enrolled subjects ages 7 to 55 regardless of the status of GABHS infection. In this study, elevated antistreptolysin-O (ASO) and anti-DNase B titers were associated with ADHD but not with tics or OCD. Increased ASO and anti-DNase B titers, however, are nonspecific measurements of recent and repeated streptococcal infections, do not indicate immunity, and are not pathognomonic of complicated streptococcal infection. In the case of RF, when ASO and anti-DNase B levels are increased, the diagnosis of rheumatic fever has always been considered only presumptive.36 It is true that subjects in the above study were younger than the subjects in some OCD/tics studies, and thus may have affected the study outcomes. Although OC symptoms from OCD and SC are similar, pathogenic strains responsible for SC may be different from serotypes associated with PANDAS. The PANDAS concept was introduced, in part, to allow for the characterization of particular strains of GABHS that are prone to the induction of PANDAS in the susceptible host.21 Additionally, if antineuronal antibody binds to basal ganglia tissue the manner through which it crosses the blood-brain barrier is not clear. Does an inflammatory process allow antineuronal antibodies to cross the blood-brain barrier? Swedo and Kiessling advanced several plausible possibilities that may allow such antibodies to cross the blood brain barrier.85 In SC, OCD, or TS, antineuronal antibody titers have been shown to correlate with symptom severity.16,17,73,85,86 Whether putative antineuronal antibody binding to brain tissue is associated with changes in underlying pathophysiology is unclear. Published reports also suggest that OC symptoms precede chorea and that OC symptoms resolve before SC symptoms.73 The temporal sequence of OC and SC symptom emergence and resolution as well as the ability of an underlying immune mechanism to effectuate clinical manifestation remains elusive. In summary, emerging evidence strongly suggests an involvement of streptococcal superantigens in the pathogenesis of RF48 and Kawasaki disease.49 Changes in HLA class II alleles appear to affect superantigen functions, dramatically leading to the proliferation of specific T cell clones,46,47 which appear to target cardiac and vascular tissues.48,49 The pressing need at this time is to examine the role of superantigens from M18 strain (known to cause RF) in SC and PANDAS. We speculate that subsets of other psychiatric disorders such as anorexia nervosa, body dysmorphic disorder, and ADHD may also share pathophysiology similar to that of RF. Findings from these studies, if affirmative, would have a profound impact for the practicing physicians in psychiatry and pediatrics.

Thanks for the information.

They are looking for a patchy look to the tongue...white or grayish that does NOT wipe off. Ronna

Claire, You have done an EXCELLENT job of summarizing TV/SCREENS as a trigger for tics.

Thanks for the replies...I will try the nystatin first (as soon as I see our doctor to get some). I will let you know how it goes. We use HMF Relete for a probiotic. Kurt HATES it but takes it with some encouragement. Ronna

For everyone who has tried nystatin and natural remedies...would you recommend I give Kurt nystatin or go with the grape seed extract etc. Since Kurt is on antibiotics I am quite anxious to make sure yeast is not a problem. I am pretty sure my family doctor will give me a prescription for nystatin. Ronna

Evangelia, FANTASTIC! We have had a similar experience! I was so helped in so many ways by everyone who took the time to post and share their experiences. I know a parent will come along and your post will mean the world to them and will give them hope! We are also Canadian. We are from Saskatchewan. Take Care and keep up the good work! Ronna

Hi Heather, So glad to hear your son is doing so well. My son has also come so far. It's been the combination of so many things. Although he is back on antibiotics I think this is just a small part of it. I am going to focus on treating yeast again. I really think most of our son's symptoms stem from the stomach...overgrowth of strep and yeast, leaky gut etc. I am going to add reflexology on a regular basis. He loved it. Well the allergy part was just a bit too much. I have done the food elimination diet and will rely on my own findings. I just don't find that wheat/gluten is a problem. I have never noticed him react adversley to it. If anyone even sneaks him milk I notice RIGHT AWAY. Take Care, Ronna

Does anyone have any experience with this?

Kara, My son has PANDAS and did not have a typical strep throat. With hindsight we think that he had a chronic sinus infection. During all of our initial investigation into why my son was having abnormal movements his CT scan and MRI showed pansinusitus...basically his sinuses were just full! It's a long, long story but my son was started on a post op antibiotics and within a few days my son was a completely different kid...tics, behavioral issues, OCDsih behavior dissappeared. Anyways, this led us down the PANDAS road. My son does also respond very well to eliminating milk, eggs, and corn from his diet however, it does seem that any infection sets him off. Last Saturday he woke up ticicng along with behavior I had forgotten about including "gagging" at everything, he was VERY emotional, impulsive and fighting with his siblings...well I started him on clindamycin quickly and this Saturday is a whole different story...minimal tics, not one fight, no gagging, and he is just pleasant to be around. I am not sure if you have considered PANDAS given your son's history with sinus infections but it may be something to consider. Ronna

Belinda, We have a dog who is an amazing addition to our family and he has been a best friend to my son. I adore the relationship that my son and dog have and I would swear they understand each other on a whole different level than I could ever. Not for one second do I regret getting a dog (well, maybe when I am cleaning up dog p**p ). Even if having a dog contributed to some minor tics I would never give him up. My son is very unaware of his tics and for the most part cares very little about them...he would die a thousand, million deaths if something happened to his dog. Ronna

Hi Claire, A topic dear to my heart as Halloween approaches. So last year what I did is...prior to Halloween I took my kids to Toys R Us and told them within reason to pick something they REALLY liked...not to hard in Toys R Us...I made a deal with them...if you give me all of your Halloween candy THEN you can have the toy you want. It worked GREAT! Halloween night they gave me their Halloween candy and in the morning "under the pumpkin" was the much wanted toy. Then I sent ALL of the candy to work with my husband... This is just something that worked for us and I plan on doing it this year. Ronna

Hi Glenn, I just wanted to add my support. Our son started ticcing 3 years ago. There is so much to learn. Through my efforts my son is doing very well. Read through many of the posts here...there is a wealth of information. Take Care. Ronna

Whoops, I forgot to say thanks for the update and we have had the same experience at our house. My son is tolerating TV now very well but milk is still a big problem. He had an ice cream last night (he was with grandpa) and boy could I ever tell immediately! Take Care, Ronna

Hi Jeff, I just thought I would let you know my son also does not do well with fish oil but does really well with evening primrose oil...as a matter of fact I also find evening primrose oil helpful for myself. On braintalk Claire had a link to some information about pyroluria in which it talked about people with pyroluria not responding well to omega 3's and doing better with the omega 6's. We certainly have found this to be the case at our house. I will try and pull the link over here but can't get on braintalk right now. Ronna

My son had tics and many other issues for over a year. He was being investigated for metabolic and neurodegenerative diseases and had nerve, muscle and skin biopsies done. He developed a post op infection at the nerve biopsy site and was started on the antibiotic Keflex. My son showed a DRAMATIC improvement in all of his symptoms and this was over a year after the onset of his tics. This sent us down the PANDAS road. My son did not respond to Pen Vk but did well with Keflex and Clindamycin. My son has not been on antibiotics for 6 months and he is doing well. We use Bonnie's supplements and I have eliminated dairy, corn, eggs and chocolate from his diet. A trial of antibiotics to see if there is any improvement would be helpful I think. In hind sight we realize my son had a chronic sinus infection which was contributing to PANDAS not the classic strep throat. Take Care, Ronna

I have noticed a huge difference for my son with the elimination of milk, eggs, corn and chocolate. We also avoid all the artificial junk etc. I don't even go down the cookie/cracker aisle at the grocery store. I also bake alot of my own cookies, muffins etc. Doing a food elimination diet was the best thing I have done for my son and my only wish is that I had done it 3 years ago! Take Care, Ronna

Hi Shannon, It sounds like you have a few things going on with your son. Have you been to braintalk. I would suggest you also post this on the epilepsy board at braintalk. I would leave a link but I cannot get on braintalk right now. You said that your son was on Strattera and Trileptol. Is he still on these meds? When I can get on braintalk there was some recent discussions about Strattera that I can provide a link for if you would like me to. I do not have experience with these meds but I think? that Strattera could possibly have a side effect of tics...I am not sure about this...sometimes I lose track of some of the stuff I read if it does not relate to my son. As well I do not have experience with Trileptol. A thread you may want to read through on the old braintalk forum about PANDAS is at: http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html What was your sons response to antibiotics? Did his tics improve with the antibiotics? My son did not respond to Pen Vk but did very well with Keflex and Clindamycin. As far as prophylactic antibiotics go...well we had our son on antibiotics for over a year prophylactically. My present opinion is that prophylactic penicillin will not help prevent strep. I am not a doctor though so please go with your own gut on this. I think that the antibiotics my son was on contributed to a proble with yeast and a "leaky gut". My feeling is that teaching really good handwashing at school and at home is the best prevention for strep as well as boosting our child's immune system with good nutrition and vitamins ets. One suggestion I would have is to do a food elimination diet to make sure your son is not reacting to any foods. We did this for our son and it was the best thing we could have done. A great book is called "Is this Your Child" by Doris Rapp. My son reacts to milk, eggs, corn and chocolate. With the elimination of these foods my son has done very well. We have my son under the care of a pediatrician and a naturopath doctor. You will find tons of information about vitamins and supplements here on Lattitudes and Braintalk. Finding answers is not a quick or easy process but answers are possible. Has your son had a MRI or CT scan? The fact that the tics show up on the EEG as abnormal discharges seems like it is more related to seizures than tics which is why I suggested the epilepsy forum at braintalk. Tics do not show up as abnormal discharges on an EEG. My son's original dx was with siezures but as time went on we realized this was not the problem for my son. About the PANDAS...from what I have read it is best to repeat the ASO titer every 3 or 4 weeks for an additional 1-2 titers (I think this can be applied to the Anti-DNA test as well) to observe a trend. For example, you have said that each time your son's titers were drawn they were elevated. Following a trial of antibiotics did the titers fall in the following months? I know how hard all of this is. Please let me know if I can help. Take Care, Ronna