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Found 10 results

  1. accidentalchristian

    Diet for PANDAS

    Hello, Our 7 year old PANDAS daughter is 6 days post IV ig and we are ready to begin addressing her diet. So much information out there on diet and PANDAS. What diets have you had success with?
  2. Hello, all! My son is on a very strict diet (SCD) to deal with his symptoms, tics, ocd, etc. He has come a long way but he feels isolated. Do any of you have teens who would like to communicate with him and talk about how bad sugar is, how everyone gets sicker with it, etc etc. He would love it if that person were in the NYC area. Thanks and good luck to everyone! Michael
  3. I read a post a while ago about Stephen Buhner's book and protocol, "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma". I downloaded the book and it is extremely informative. I am trying to schedule a consult with his referral (Julie) for 2 weeks from now. I am curious if others have tried this approach to kill mycoplasma and if it was successful. If so, how long did it take and do you have any suggestions. Thank you. Heidi
  4. I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel
  5. I'm just about ready to take the plunge and go gluten free with my son. Last Saturday, when the doctor was going over results, he asked if we ate out much. This is a very rare thing for us to do. He said that MSG could cause high Glutamate and low GABA that showed up in the neurotransmitter test. I've been researching and it seems like there is a connection with MSG and gluten products. Is this right? I'm also beginning to understand that it also occures naturally in our foods such as vegetables and fruits. I'm about ready to plant my own garden. Is it possible to was this stuff off your fruit and vegetable or do you have to buy organic? How do you avoid MSG? Does this show up in food allergy testing? I have been going back and looking at the post I did earlier on Gluten Free. Thanks for all your answers. I have been working on a menu plan but I still lack some confidence in trying to pull this off. Am I dealing with a double edged sword trying to go gluten and MSG free? Is it possible to do both? My son really likes pasta dishes? Can anyone recommend a brand of noodles to try creating mac and cheese and spegittie?
  6. My daughter, Jessica, suffered with tics, ADHD and trouble sleeping for 5 years. There were disabling, but the OCD behaviors were most troubling. She would pull teeth out by the root, force her finger down her throat causing vomiting and injuring the inside of her mouth, hit those next to her, etc. We tried supplements, diets and other therapies. After years of research, trial and error, I found that the COMPLETE ELIMINATION OF GMOs from her diet effected a 95% improvement in symptoms. Why are kids of this generation suffering more than in previous generations? It could be the vaccination schedule, it could be the toxins in our environment, and/or it could be the consumption of food that looks, smells and tastes like the food we ate as children, but is in fact genetically foreign. www.SafePlate.net is informational, safe and without anything for sale. My hope is that if we can help another family, it will bring meaning to the years Jessica suffered. Please contact us through the website if you need any support with a GMO-free diet or to share your GMO-free success story. Best wishes.
  7. New study abstract (July 3, 2013) is below. Full research here. Discussion article here. Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic ChildrenHigh proportions of autistic children suffer from gastrointestinal (GI) disorders, implying a link between autism and abnormalities in gut microbial functions. Increasing evidence from recent high-throughput sequencing analyses indicates that disturbances in composition and diversity of gut microbiome are associated with various disease conditions. However, microbiome-level studies on autism are limited and mostly focused on pathogenic bacteria. Therefore, here we aimed to define systemic changes in gut microbiome associated with autism and autism-related GI problems. We recruited 20 neurotypical and 20 autistic children accompanied by a survey of both autistic severity and GI symptoms. By pyrosequencing the V2/V3 regions in bacterial 16S rDNA from fecal DNA samples, we compared gut microbiomes of GI symptom-free neurotypical children with those of autistic children mostly presenting GI symptoms. Unexpectedly, the presence of autistic symptoms, rather than the severity of GI symptoms, was associated with less diverse gut microbiomes. Further, rigorous statistical tests with multiple testing corrections showed significantly lower abundances of the genera Prevotella,Coprococcus, and unclassified Veillonellaceae in autistic samples. These are intriguingly versatile carbohydrate-degrading and/or fermenting bacteria, suggesting a potential influence of unusual diet patterns observed in autistic children. However, multivariate analyses showed that autism-related changes in both overall diversity and individual genus abundances were correlated with the presence of autistic symptoms but not with their diet patterns. Taken together, autism and accompanying GI symptoms were characterized by distinct and less diverse gut microbial compositions with lower levels of Prevotella, Coprococcus, and unclassified Veillonellaceae.
  8. I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel
  9. I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel
  10. This is the most IMPORTANT INFO I have learned in the last 7 years! MIT PhD Stephanie Seneff talks about the pathways that works with our genes creating Autism, learning disabilities, Alzheimer's, autoimmune disorders, cancer, diabetes, heart disease, obesity and our epidemic of vitamin D deficiency. Only available today. Make time to listen.... For yourself and those you love. Peggy http://gmosummit.org/broadcasts/
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