Ronnas

Hi Claire, Thanks for the link. I would have to agree with alot of what is said in by Dr. Mercola. However, at a more basic level if you apply the concepts in the South Beach Diet along with what you already know it does help make you more aware of what you are eating. I was just thinking about the South Beach Diet last night and wondering why I feel so much better on it. I was skimming around last night and was reading over at braintalk about gluten sensitivity and celiac disease. One thing that struck me was that for the most part I have been mostly gluten free while I have been on this diet. It makes me wonder if this is the reason I feel so good. For what it is worth I have lost about 12 pounds on this diet and it has been pretty easy. It has just made me think alot more about the stuff I put in my mouth, for example, is eating Tim Horton timbits really what I need to do just because they are sitting on the coffee table at work! With the influence of this diet I eat tons of veggies which believe me is highly unusual for me. Again I cannot say enough about getting rid of the carbs and sticking to good ones. Seriously, just having strawberries is a treat for me now and I just don't crave bread, chips etc the way I use to. This month I have just had so much more energy. By reducing carbs and high sugar foods I am sure this helps any "yeast" issues as well. I have found this book useful just for a basic understanding of how foods effect insulin levels and it has pointed me in the right direction for making healthier choices for myself. Even though I was good at this for my kids...I didn't always practice what I preach. For the first time in my life I bought a bikini to wear on the beach this summer and this is miraculous!

Lots of fruit (stawberries, watermelon, apples, oranges etc.) Banana boat...put peanut butter on a banana...there are many variations of this. You could even do a "banana split" with nutrawhip which is dairy free...add fruit, granola, pinapple, a bit of chocolate...anything you can think of...you can also use some soy ice cream...it actually does taste like the real stuff. My son does not like to drink soy or rice milk but he does not mind it on his cereal. Kurt likes rice crispies with bananas or blueberries on top. peanut butter and jam sandwiches My son is beginning to tolerate eggs a bit now so he really likes a scrambled egg sandwich (scrambled eggs between two pieces of toast). sometimes we have left overs such as a piece of chicken from the night before along with some fruit and toast. I find breakfast the easiest...I find lunch a bigger challenge! Ronna

Kimwal, Feel free to e-mail me if you want to talk. I have talked to other parents on the phone as well if you need someone to talk to. The IV drip you are talking about is IVIG treatment. I know some other parents who have had success with Plasma Exchange. Have you talked to your doctors about this? When you treated your son for strep did he show some improvement? What was the antibiotic used? For my son he responded well to Keflex and Clindamycin but had no response to Pen Vk. I understand your frustration. Last fall I felt so overwhelmed and just completely done, not to mention EXHAUSTED. So last Novemberish with the help of our pediatrician we stopped Kurt's meds...this took about 2 months. Believe me there were plenty of times I wanted to go back to the meds back but we stuck it out. I feel like it was January before we had a good "picture" of where Kurt was at. With school finishing it may be a good time to go med free if this is what you and your doctor decide. Then I did a food elimination diet. Not just casein and gluten. We discovered that milk, eggs, corn and chocolate were a problem. The corn surprised the heck out of us and it is in EVERYTHING. Then I started adding vitamins one at a time so I could tell if my son was having a bad reaction to something etc. For example, about 8 months prior to this I had tried giving bonnie's vitamins and the fish oil to Kurt and something about it seemed to set Kurt off behaviorally so I quit. When I added everything one at a time I realized it was the fish oil Kurt was reacting to. So now he does very well on bonnie's vitamins and a different EFA which is low in fish oil. Then after a few months of the vitamins/diet we started dealing with yeast and gut issues. I will tell you a year ago it was like I was running around like a chicken with my head cut off looking for answers. It was not until I took a deep breath and did everything one at a time did we start seeing improvement. I will tell you what I have done for myself in the last six months which has made a BIG, BIG difference. 1. The most important thing was that I started getting a minimum of 8 hours of sleep a night. ie. I got off the computer at a decent time. I am a changed person and seriously I was extremently sleep deprived for about 2 years...this is not good for you and last fall I was feeling crazy and absolutely terrible. I use to be up on the computer till 1:00-2:00 AM each night and then up with the kids about 6:30 AM. Although I still have moments when I wish I had more time for the computer and my search for answers...we have all done just fine. 2. I started eating really healthy. I really like the south Beach diet. It is heart healthy which is important to me. I have eliminated carbs and I feel so much better and I have way less PMS. 3. I started taking some vitamins etc. 4. The last few years have been very stressful for my husband and I and our marriage has suffered because of it. We have begun to rebuild our marriage and family life and I will tell you it is the best thing we could have done for our kids...they are much more relaxed the more they see us relaxed. Basically I needed to start spending time with my husband...ie. he did not want to look at the back of my head anymore as I typed away on the computer or watched TV. I know all of this is hard! It is time to take a deep breath and start over with the priority being to take care of yourself before you try any more treatments for your son. Once you are rested then it is so much easier to focus on making the right decisions for your son. I still have rough days but nothing compared to a year ago. Even this morning I was completely exasperated with my son but because I react to it all differently now and I am not so overwhelmed things are pretty calm and my son does better because of it. Take Care, Ronna

We have thought of using Body Talk as a friend of mine has had great success with it. I have heard good things about Body Talk.

Since I saw that this thread is bumped up I just wanted to post a small bit about prophylactic antibiotics. I left a longer thread a few days ago about this but thought I should add it here also. We have chosen to not keep Kurt on prophylactic antibiotics as I think it has contributed to problems with yeast and a "leaky" gut kind of thing in which Kurt does not tolerate milk, eggs, chocolate and corn. In my search on prophylactic antibiotics for treating rheumatic fever I found out that there is only one study done from the 60's that was poorly designed. At present the NIMH is doing a long term study about propylatic antibiotics. At present I am skeptical that prophylactic antibiotics will prevent a PANDAS episode in vulnerable kids. Haivng said this I would say my knowledge is forever evolving. Everyone needs to go with their own feelings on the topic. My solution for Kurt has been to teach very thorough hand washing at home and at school...along with classmates etc. We get a throat swab at ANY sign of a cold, sniffle, scratchy throat or any sign of an increase in tics, behavioral issues etc. My other son was positive for strep so we treated Kurt at the same time as well even though he did not come back positive for it. All medications even antibiotics have side effects. As with all medications the pros and cons need to be assessed. My feeling is that there are natural alternatives to antibiotics and it is more useful to build up the immune system through healthy eating and vitamins etc than to give long term antibiotics which can cause an imbalance in the intestinal flora and therefore compromise the immune system. Anyways, this is just my opinion based on our experience. Believe me at one time on completely embraced prophylactic antibiotics and I wholehartedly understand the need to protect your child from STREP! Anyways, this is where we are at now...in 6 months...who knows! Ronna

Hi ya Claire! I am so glad to hear about the improvment in your son! It sounds exactly like what has happened with our son. As we have improved his health he has been much more able to tolerate TV, stress, fatgiue etc which all use to be big triggers for him. With strep Kurt also had big time fears/ separation anxiety which NO amount of logic could reach! It was an IMPOSSIBLE time. If the fears/anxiety return then I know something is up. Because we are more "north" spring is just arriving and I have also noticed this is a hard time of the year for Kurt. He is a little off...mostly he is exhibiting this through resistance to going to school and a clinginess with him Grandpa but still I would say he is doing better than he has in past years. Interestingly, my younger son did have strep a month or so ago and to me I can see PANDAS symptoms but they are just so much more mild. It makes me wonder how many children have the same reaction to strep but the parents never realize or just attribute it to being a symptom of the child being ill. Matt is the most laid back kid but in the last little while he has been much more clingy and easier to anger and needing the light to be on a bedtime etc...this is not my Matt. With time I know this will disappear. Anyways, now I am just blabbing away. My husband took the kids for a boat ride so I have a few hours...you know I should be cleaning the house but here I sit! Ronna

Claire, Do you use capryllic acid in a liquid or a capsule form. If it is capsule can you tell me the brand name? Thanks, ronna

Chemar, A wonderful analogy and it made me smile...blessings to you and your family. As you know I was recently at Fatima and jeepers one of my prayers/reflections from that day actually happened for our family. The power of prayer is so very powerful. The Holy Spirit talks to us all of the time but we must take the time to listen. We all have that voice within us that will guide us in caring for our children. Take Care, Ronna

PS. I just thought I would add that the probiotic we use is HMF Replete. My recommendation would be to avoid any probiotic with streptococcus thermophilus in it. Ronna

I have not had a lot of time to post lately. I just thought I would mention that we had my son on prophylactic antibiotics for well over a year as this was the recommendation by our infectious diseases doctor and our pediatrician. The following is just based on my own expereinces and research and please don't take it as advice for what to do for your own child... We have chosen not to keep Kurt on prophyactic antibiotics because I think it has contibuted to a yeast problem with Kurt and food intolerances. I am unconvinced that the prophylacitc antibiotics can actually prevent a strep occurence. The only study done in connection to rheumatic fever and prophylactic antibiotics (that I can find) was done in the 60's and is a very poor study. What we do is: 1. Practice very good handwashing. (home and school) 2. Absolutely promptly at any sign of a upper respiratory infection, cold, sore throat, runny nose, sniffle, etc for anyone in our family I get a throat swab done. 3. If Kurt is postive for strep (hasn't happened yet) or one of the kids is postitive for strep (this happened not to long ago with my younger son) then I put Kurt on antibiotics also (10 days) and I watched my younger daughter closely for symptoms. Anyways, I guess from my experience I would encourage everyone to weigh the pro's and cons of prophylactic antibiotics and to really talk to their doctors and to the NIMH in regards to what they recommend. Kurt has been off antibiotics for 5 months and he has done fine. We have concentrated much more on building his immune system and he is doing far better than I could have imagined a year ago. Believe me I DEMANDED prophylactic antibiotics at one time for my son only to realize later that it was not really the answer for us. I read more and more parents online talking about prophylactic antibiotics and I guess I would just want to say that from everything I have read and learned over the last year there are side effects and consequences to choosing antibiotics. This is just my experience and everyone very much needs to follow their own gut feelings. Although I still have my "down" days with time so much of this is just so much easier to deal with. I would say beyond antibiotics etc... time is a great healer. Take Care, Ronna

Welcome to Lattitudes! All of this can be very overwhelming and with time it gets easier. I have posted in the past about all of the things we have done to help our son. These have included treating vitamin deficiencies, treating yeast, and eliminating dairy, corn, eggs and chocolate. Keep reading and learning. I also agree with Chemar and I think it is very important to take the time to find a natuopath/medical doctor who can give you some guidance in finding what may work for your child. I had some problems with the following post due to some editing problems but it basically outlines what we did with my son. Keep in mind that what works for one child may not work for another. For example, many parents report that fish oils are beneficial for their child, well my son reacted to fish oil in terms of behavioral issues. It is ALOT of trial and error and it takes alot of time. Best Wishes in your search for answers. http://www.latitudes.org/forums/index.php?...p?showtopic=496 Take Care, Ronna

My son is doing better now but at one time reading and any attention to fine motor skills had him ticcing tons. I think Kurt has many triggers. As time goes on and with him doing well on supplements and dietary changes I think for my son it is a "threshold" kind of thing. Do you know what I mean? It feels like we have eliminated alot of stressors on his body...ie. strep, food intolerances, and vit deficiences and now he is tolerating fatigue, stress, reading, TV and attention to fine motor skills MUCH better. Believe me he still has his days...but if I am careful with his diet etc. he is tic free. However, the tics were never the biggest issue for me. For the most part he is doing very well behaviorly which is a BIG thing. I also use a checklist/reward system for him and this works very well. I spend a TON of time discussing responsibility and his choices. I want him to be able to make GOOD choices. This come naturally to my other son but for Kurt I have to teach him this. Ronna

Claire, I take many of the same supplements as my son does and it makes a huge difference for me. I also started my brother on vitamins and he feels 100% better also. I had crazy PMS and this has disappeared with supplements. A book called "Seven weeks to Emotional Healing" by Joan Mathews Larson was very good. Ronna

Hi Claire, My son is doing very well. He is tolerating watching TV again. I think his not tolerating TV was a part of his "threshold" being lowered given his food sensitivities and yeast from being on long term antibiotics. Now that his diet is well controlled and he is on the supplements he is tolerating alot of things that use to be a trigger for him such as stress, fatigue and TV etc. As well, he has made it through a winter of colds, flu etc quite well and he "looks" alot healthier than he has in years. Stopping all of his meds has been the biggest blessing and I feel like I have my son back. I hope all is ok for you and it sounds like you are working too hard. Try and take time to catch your breath. Ronna

Hi All, Welcome Mommy 007! Over the last year I have learned alot about PANDAS. A thread you may want to read on BrainTalk's old board would be: http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html If you go to the Tourette Syndrome Board at BrainTalk you will find parents who actively post about PANDAS as well. As well BrainTalk has a PANDAS board as well as does Yahoo. As a start it is best to read as much as you can find. My son was on prophylactic antibiotics for a year and since January has been on no meds. My son is also another example of a child who has been helped tremendously by supplements, changes in diet (eliminating dairy, corn, eggs and chocolate) treating yeast and building his immune system up. In my experience from reading these boards I have found that the greatest success has been found from parents who are guided by expereinced naturopathic doctors. In our case we have a very supportive pediatrician and a naturopath doctor who guides me and wtih whom I can discuss different options. Initially, all of this can be so overwhelming but with time it becomes easier and a path forms. Below is a recent article about PANDAS which I thought you might find interesting. I am not sure if I have posted it before...I have the worst case of jet lag right now and my brain is very muddled! Let me know if you have any questions. Ronna -------------------------------------------------------------------------------- COMMENTARY The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Subgroup: Separating Fact From Fiction Abbreviations: OCD, obsessive-compulsive disorder • PANDAS, pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection • NIMH, National Institute of Mental Health Over a century ago, Sir William Osler wrote, "To carefully observe the phenomena of life in all its phases ... to call to aid the science of experimentation, to cultivate the reasoning faculty, so as to be able to know the true from the false—these are our methods."1 These were also the methods that led to the discovery of poststreptococcal obsessive-compulsive disorder (OCD) and tic disorders and a decade of observations and research resulting in the description of a novel cohort of patients, the pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup.2,3 In this issue of Pediatrics, Kurlan and Kaplan raise questions about the veracity of these data.4 To respond, we will provide a brief literature review and clarification of the guidelines for management of a patient in the PANDAS subgroup. The discovery of the PANDAS subgroup was the result of 2 parallel lines of clinical research conducted at the National Institute of Mental Health (NIMH): studies of children with OCD and investigations of children with Sydenham’s chorea, the neurologic manifestation of rheumatic fever. Systematic observations of children with OCD revealed that, although the majority of children had a gradual onset of symptoms over several weeks to months, a subgroup of the patients experienced an explosive "overnight" onset of obsessions and compulsions followed by a relapsing-remitting symptom course.5 Closer observation revealed that the neuropsychiatric symptom relapses frequently occurred after episodes of streptococcal pharyngitis or scarlet fever. These findings in OCD closely paralleled those from a series of investigations of Sydenham’s chorea.6 In those studies, 65% to 100% of children with Sydenham’s chorea were noted to have obsessive-compulsive symptoms, typically presenting 2 to 4 weeks before the onset of the adventitious movements and peaking in severity simultaneously with the chorea.6,7 Longitudinal observations of the OCD subgroup and the patients with Sydenham’s chorea clearly demonstrated a temporal association between streptococcal infections and obsessive-compulsive symptoms. This relationship was not only observed consistently among patients presenting to the NIMH but also noted by several independent groups.8–11 The nature of the association was unknown, and the observations could not elucidate whether the streptococcal infections played an etiologic role, but these issues would be addressed through subsequent scientific experimentation. The title of the article by Kurlan and Kaplan4 provides a provocative starting point for discussion of the scientific hypotheses that derive from the clinical observations of the PANDAS subgroup. However, the authors subsequently blur the distinction between clinical observation and scientific investigation, leading them to dismiss the well-documented observations that neuropsychiatric symptoms are associated with streptococcal infections in the PANDAS subgroup because the etiology of PANDAS "remains a yet-unproven hypothesis."4 The authors thus recommend against obtaining throat cultures or serial titers in patients with abrupt-onset OCD and tics "until more definitive scientific proof is forthcoming." We strongly disagree with this recommendation. The continued threat of rheumatic fever mandates the detection and appropriate treatment of streptococcal infections, including asymptomatic infections, the leading cause of rheumatic carditis in the United States.12 If one argues that OCD and tics are a manifestation of streptococcal infection for children in the PANDAS subgroup, then the infections aren’t really "silent" or "asymptomatic." In either case, a conservative treatment course would include administration of antibiotics for culture-proven streptococcal infections. In addition, Murphy and Pichichero11 have documented that prompt treatment of streptococcal infections is associated with a rapid diminution of obsessive-compulsive symptom severity for some children in the PANDAS subgroup. Thus, the potential benefits of appropriate diagnosis and treatment of an occult streptococcal infection far outweigh the modest cost of obtaining a throat swab and culture. Of course, when throat cultures are obtained, there is a risk of falsely identifying a "carrier" as an asymptomatic infection, but this risk is small. Systematic studies typically report the frequency of carriers to be <5% to 10%.13 Thus, the vast majority of positive throat cultures represent true streptococcal infections, for which antibiotics administration is the accepted standard of care. CLINICAL CRITERIA TOP CLINICAL CRITERIA SCIENTIFIC HYPOTHESES CLINICAL RECOMMENDATIONS CONCLUSIONS REFERENCES Kurlan and Kaplan contend that the 5 criteria defining the PANDAS subgroup are not "particularly useful in distinguishing patients suspected of PANDAS from children with more typical cases of TS [Tourette’s syndrome] or OCD."4 In actuality, the criteria have been used successfully by a variety of clinical groups to define cohorts of patients with common clinical characteristics and a predictable clinical course.3,9–11,14 This had been the original purpose of describing the PANDAS subgroup: to enable investigators to identify a clinically homogeneous group of patients for inclusion in research studies at the NIMH and elsewhere. Subsequent investigations have demonstrated that the criteria have clinical utility as well, in that they define a distinct cohort of patients who are uniquely responsive to novel therapeutic interventions and prevention strategies. The following is a clarification of the criteria. The Presence of a Tic Disorder and/or OCD The symptom characteristics and severity required for diagnosis are defined in the Diagnostic and Statistical Manual of Mental Disorders.15 The neuropsychiatric symptoms of the PANDAS subgroup were intentionally limited to tics and obsessive-compulsive symptoms because of our interest in establishing a homogeneous patient cohort for research studies. Subsequent interest in the PANDAS subgroup has sparked a number of authors to speculate that the criteria should be expanded to include other related disorders such as attention-deficit/hyperactivity disorder16 and anorexia.17 However, such a change requires systematic evidence documenting that the association between streptococcal infections and symptom onset in these disorders is not merely a chance finding; to date, such systematic studies have not been done. Prepubertal Age at Onset, Usually Between 3 and 12 Years of Age This criterion was based on historical data demonstrating that rheumatic fever and other poststreptococcal sequelae are uncommon before the age of 3 years and after the age of 12 years.18 Fischetti19 provides a possible explanation for the rarity of postpubertal sequelae of streptococcal infections and demonstrated the presence of serum antibodies conferring protection against streptococcal infections in 98% of healthy 12-year-old controls, making it unlikely that poststreptococcal neuropsychiatric symptoms would have their initial presentation after this age. Thus, we set the age range for the PANDAS subgroup at a point that had biological relevance and would include 98% of the cases. Abrupt Symptom Onset and/or Episodic Course of Symptom Severity Prospective longitudinal investigations have demonstrated that this criterion is the most useful in identifying children in the PANDAS subgroup.2,3,9–11 Contrary to the concerns expressed by Kurlan and Kaplan,4 the abrupt onset of tics in the PANDAS subgroup is clearly different from the typical onset of an isolated, intermittent, simple motor or vocal tic, because children in the PANDAS subgroup experience the simultaneous onset of several different motor and vocal tics of such intensity and frequency that emergency treatment is often sought.14 PANDAS-related OCD is also easily distinguished from non-PANDAS OCD, because the latter patients have a slow, gradual symptom onset, whereas children in the PANDAS subgroup have an overnight "explosion" of obsessive-compulsive symptoms, reaching maximal, clinically significant impairment in 24 to 48 hours.3,20 The episodic, relapsing-remitting course of the PANDAS subgroup is distinctly different from the undulating, waxing-waning course seen in other patients with OCD or tic disorders.20,21 When the symptoms of a child in the PANDAS subgroup are graphed against time, a "saw-toothed" pattern emerges, in which periods of symptom quiescence are interrupted abruptly by severe symptom exacerbations; these relapses typically take several weeks to months to resolve. Prospective, longitudinal evaluation of these patients allows for documentation of the relationship between the symptom exacerbations and streptococcal infections: throat cultures obtained at the beginning of a symptom relapse will be positive, and titers obtained at baseline and 4 to 6 weeks later will demonstrate a clinically significant rise. Temporal Association Between Symptom Exacerbations and Streptococcal Infections Although it was postulated initially that there could be a significant time lag between the inciting streptococcal infection and the presentation of the neuropsychiatric sequelae (such as that seen in Sydenham’s chorea),6 clinical observations of the PANDAS subgroup revealed that the window is actually much narrower. Exacerbations of neuropsychiatric symptoms begin within 7 to 14 days after the streptococcal infection and usually occur simultaneously (ie, a throat culture obtained because of the recent onset of OCD and/or tics is positive).3,11,20,21 One caveat in evaluating the relationship between streptococcal infections and neuropsychiatric symptoms is that the disorders are so common that co-occurrence can be a random coincidence rather than a clinically significant finding. OCD occurs in 1% to 2% of school-aged children, and transient motor tics occur in as many as 10% to 25% of early elementary students.22,23 Furthermore, during regional streptococcal epidemics, the majority of children will be infected at least once during the outbreak.13 Thus, as discussed in our original report,3 a single positive throat culture or elevated antistreptococcal antibody titer is not sufficient to determine that a child’s neuropsychiatric symptoms are associated with streptococcal infections.3,20 Instead, the determination that a child fits the PANDAS profile is made through prospective evaluation and documentation of the presence of streptococcal infections in conjunction with at least 2 episodes of neuropsychiatric symptoms, as well as demonstrating negative throat culture or stable titers during times of neuropsychiatric symptom remission.3 A child who has multiple symptom exacerbations without evidence of streptococcal infection would not be considered part of the PANDAS subgroup, nor would a child who has numerous streptococcal infections without subsequent symptom exacerbations. Presence of Neurologic Abnormalities During Periods of Symptom Exacerbation Neurologic examination of acutely ill children in the PANDAS subgroup reveals that 95% have choreiform movements.3 These fine piano-playing movements of the fingers are not easily confused with the writhing adventitious movements of Sydenham’s chorea.24 Choreiform movements are not present at rest and must be elicited through stressed postures, whereas choreatic movements are present continuously and increase with unrelated voluntary movements. In addition, choreiform movements are an isolated finding, whereas the choreatic movements of Sydenham’s chorea are accompanied by a failure to sustain tetanic contractions (milk-maid’s grip, snake-like tongue) and muscle weakness.6,18 Choreiform movements and chorea may share a common pathophysiology (related to dysfunction of the basal ganglia), but the clinical manifestations are quite distinct, and children in the PANDAS subgroup do not represent missed cases of Sydenham’s chorea. In fact, rheumatic fever, including Sydenham’s chorea, is a strict exclusionary criterion for the PANDAS subgroup.3 SCIENTIFIC HYPOTHESES TOP CLINICAL CRITERIA SCIENTIFIC HYPOTHESES CLINICAL RECOMMENDATIONS CONCLUSIONS REFERENCES Clinical observations of the PANDAS subgroup led to a number of scientific hypotheses including the postulate that the tics and OCD represent sequelae of group A streptococcal infections. This etiologic hypothesis involves a series of factors including pathologic strains of group A streptococcal bacteria, host susceptibility (genetic, developmental, or other), and abnormal immune responsivity (Fig 1). The working model of pathogenesis not only provides a framework for understanding the etiology of OCD and tic disorders but also allows for the development of novel intervention and prevention strategies. A recent review provides a detailed description of the model as well as ongoing research efforts directed at understanding the pathologic mechanisms involved in the PANDAS subgroup.25 View larger version (34K): [in this window] [in a new window] Fig 1. Model of pathogenesis for PANDAS. CLINICAL RECOMMENDATIONS TOP CLINICAL CRITERIA SCIENTIFIC HYPOTHESES CLINICAL RECOMMENDATIONS CONCLUSIONS REFERENCES These guidelines are drawn from our clinical and research experience as well as the practice parameters of the American Academy of Child and Adolescent Psychiatry.26 Laboratory testing: Children with an abrupt onset or exacerbation of OCD or tic disorder should have a throat culture obtained. If the symptoms have been present for >1 week, serial antistreptococcal titers may be indicated to document a preceding streptococcal infection. (Titers should be timed to catch the rise at 4–6 weeks.) Use of antibiotics: Antibiotics are indicated only for the treatment of acute streptococcal infections as diagnosed by a positive throat culture or rapid streptococcal test. Clinical trials are underway to determine whether prophylactic antibiotics will be useful in the management of children in the PANDAS subgroup, but at present, they are not indicated. In the only placebo-controlled trial reported to date, penicillin administration failed to prevent streptococcal infections (14 of 35 infections occurred during the penicillin phase of the crossover trial), and thus there were no between-group differences in neuropsychiatric symptom severity.27 Management of neuropsychiatric symptoms: Children in the PANDAS subgroup respond to treatment with standard pharmacologic and behavioral therapies. Obsessive-compulsive symptoms are treated best with a combination of medication (typically, a serotonin reuptake-blocking drug) and cognitive-behavior therapy, and motor and vocal tics respond to a variety of pharmacologic agents. Immunomodulatory therapies: A randomized, placebo-controlled trial of intravenous immunoglobulin and therapeutic plasma exchange demonstrated significant and persistent improvements for a group of 29 severely affected children meeting criteria for the PANDAS subgroup.28 The specificity of their response was demonstrated through a subsequent open-label trial of plasma exchange, which failed to produce benefits among children not meeting the PANDAS criteria.29 After the publication of these reports, the American Society for Apheresis ranked therapeutic plasma exchange for poststreptococcal OCD and tic disorders "acceptable as second-line therapy or as an adjunct to primary therapy based on controlled trials."30 Thus, immunomodulatory therapy may be a consideration for acutely and severely affected children in the PANDAS subgroup. Clinicians considering such an intervention are invited to contact the PANDAS research group at the NIMH for consultation. CONCLUSIONS TOP CLINICAL CRITERIA SCIENTIFIC HYPOTHESES CLINICAL RECOMMENDATIONS CONCLUSIONS REFERENCES The PANDAS subgroup is both a clinical entity and the subject of scientific experimentation. Systematic, longitudinal observations have demonstrated that the PANDAS subgroup has a distinct clinical presentation and an identifiable course of symptoms and that, for these children, there is a clear relationship between streptococcal infections and neuropsychiatric symptom exacerbations. Additional research is required to determine the nature of that relationship as well as to determine the etiopathogenesis of the poststreptococcal obsessive-compulsive symptoms and tics. Additional studies are required also to determine the role of immunomodulatory therapies and antibiotics prophylaxis for this group of patients. Meanwhile, it is time to end the debate about the existence of the PANDAS subgroup and begin to "call to aid the science of experimentation ... so as to be able to know the true from the false." Susan E. Swedo, MD, Henrietta L. Leonard, MD and Judith L. Rapoport, MD Pediatrics and Developmental Neuropsychiatry Branch Intramural Research Program National Institute of Mental Health Bethesda, MD 20892 Division of Child Psychiatry Brown University Providence, RI 02912 Child Psychiatry Branch Intramural Research Program National Institute of Mental Health Bethesda, MD 20892 FOOTNOTES Received for publication Aug 27, 2003; accepted Aug 27, 2003. Address correspondence to Susan E. Swedo, MD, Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, 10 Center Dr, MSC 1255, Bethesda, MD 20892-1255. E-mail: swedos@mail.nih.gov REFERENCES TOP CLINICAL CRITERIA SCIENTIFIC HYPOTHESES CLINICAL RECOMMENDATIONS CONCLUSIONS REFERENCES Osler W. 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Hi all, Claire, I am with you on the issue of PANDAS. I think there is just so much more to it than just strep. I think the answers are there to be found in our children but nobody is looking closely enough. I have read tons about autism as there is so much to be learned from it. I look forward to the day (our children will be grown) that other parents in the next generation do not have to go through this search for answers... Ronna

Hi Claire, I just got lucky that Kurt will eat anything. My other son is probably the pickiest eater around and I think he would rather die than eat asian food! I feel like a restaraunt cook because everyone is eating something different. Believe me my other kids want no part of having a dairy, corn, egg, chocolate free diet! ronna

Intersting, For the last month or so I have been doing a kind of "south Beach" diet and I feel so much better now that I have eliminated alot of carbs (ie. all of the "white" food). Ronna

Claire, I am so glad to hear of the improvement. We also noticed big changes with the food elimination diet. Within a week Kurt was back to his old personality and I hear you about how nice it is to not be "irritating". You are doing an amazing, wonderful job with your son. Congratulations. I have found that eliminating the offending foods is not that hard given the results and Kurt understands this now also so he is onboard without too much complaining. Take Care, Ronna P.S. I also have spent a small fortune on restocking the kitchen! I am going to take an asian cooking class. The asian cooking books are awesome as you can actually find recipes that work. A side bonus is that I have lost 10 lbs as we must have the "healthiest" cupboards in the city!

I didn't have the box in front of me...I gave Kurt Lactaid Ultra which is a lactase enzyme which makes milk and dairy foods more digestable...I had read about this in the book "Is this your child" by Doris Rapp. It did seem to help and Kurt did settle down for the rest of the afternoon. I should say that it helped with the rage attack but he spent the afternoon still ticcing. The culprit in the KD was the modified milk ingredients in the cheese sauce. Ronna

Ok I have read "somewhere" that if you have a dairy allergy then goat's milk is not the best choice as it is similar to cow's milk...I will try and dig the info up but at one time I distinctly remember not choosing goat's milk for this reason. I use soy milk for cereals etc. Kurt does not like to drink this milk. I use SO GOOD ice cream and this is good. I use rice dream in baking as I am trying to alternate as I am concerned about kurt developing a sensitivity to soy. Kurt is not picky so he has always just eaten whatever I give him. Kurt does not tolerate eggs. For protein he eats peanut butter on lots of stuff (apple, bananas etc)...skippy peanut butter does not have corn. Kurt eats meat almost everyday. He loves stir-fry's and he likes shrimp and chicken in it. Even though his diet is limited I think he probably eats a more balanced diet than most kids. Ronna

Hi guys, I am sorry to hear that gluten is a problem also! If it means anything I have found that now that Kurt has been off corn, eggs, dairy and chocolate for about 4 months he can now tolerate corn as long as it's kept at a low level. He tolerates eggs in baking (still can't eat an egg) and today he had a small easter chocolate and he did ok. I did try kraft dinner last week and this went horrible. He fell to pieces right in front of my eyes. In desperation I gave him a lacteez and this did help him settle down. Maybe your son will be able to tolerate a small amount down the road. We have done pretty minimal testing with Kurt. I have read alot about food sensitivities and it is my feeling that the only way to be sure of a food sensitivity is to do a food elimination diet. I would also say that kurt cannot eat ALOT of his favorites anymore...can't tell ya how much we all miss pizza! However, Kurt is pretty understanding of not eating these food considering how much better he feels. (I don't think he'll EVER want to eat Kraft Dinner again!)...my 5 year old son LOVES junk food and now that it is not even in the house he is surviving and can often be seen munching on apples (miracles do happen!) Hang in there. I have found that over time eliminating all of these foods has become easier...and I have lost weight also which is kind of nice! Ronna

Thanks chemar, I forgot that soya sauce has wheat. It has been a blessing that Kurt tolerates wheat. A good book is... "Special Diets for Special Kids" by Lisa Lewis, Ph.D.. she has a second book out also. Ronna

Oh I wish I had more time...Claire I have the busiest day coming up but I have some ideas for you. Do you have a costco? I do alot of my shopping there (as a matter of fact I will be there this morning). For my son dairy is the worst of all of the food sensitivities. Milk, cheese, butter etc are terrible. Ok, I will post a more thorough list later but milk is in most breaded things (so is corn and gluten so maybe you are staying away from this), it is in deli meats, hot dogs, donuts etc. The only thing that helps for Kurt is to stay completely away from dairy. I tried on Monday (he had a day off from school) to give him Kraft Dinner...well let me tell ya it didn't go so good. He had a complete meltdown and was FULL of RAGE...it was awful. I gave him a lactaid out of desperation and this did help. Asian cooking books are just the BEST as you can read the whole recipe book from front to back and Kurt can eat just about anything in it. I am trying hard and we have had plenty of "yucky" suppers while I am trying to learn how to Kurt more Asian food. We eat alot of stir fry's. My easiest stir fry recipe is: 1/3 C. water 1 TBSP soya sauce 1/2 TSP sugar 1 garlic glove I usually times this recipe by 4 if it is for the whole family. I use the stir fry vegies you buy in a big bag from costco and either the shrimp or chicken (a black box from costco...fully roasted chicken breast strips by Pinty's). mix all of the above in a wok or skillet. To thicken the sauce I use arrowroot flour instead of cornstarch and we notice no difference. Pour on top of gluten free pasta or rice. This is very good. We use a soy milk from costco called SILK soy beverage. For an ice cream treat we use SO GOOD soy ice cream. I use rice dream for baking muffins etc and have noticed no difference in my baking. I use rice dream just to alternate with the soy as I do not want Kurt to become sensitive to soy. Anyways, yikes time is ticking by...more later. Ronna

claire, A good idea for a thread. Sorry to say my pancakes were pretty bad also. I have worked hard to eliminate corn though and I will post some of my ideas tomorrow. I promised myself no more late nights! Ronna