HelenJenn

his initial ocd symptoms only came on after having a course of antibiotics. we feel that it is his gut that is creating his issues. it was not only the antibiotic issue we encountered but also that he had had his initial symptoms(frequent urination) after eating at an event-wheat, dairy, sugar, strawberries. we were not sure what was the trigger but it happened within about 10 min and lasted for 6 weeks. so we could see his symptoms were triggered by food and for us with antibiotics. due to his rapid decline with every small sore throat etc i researched natural antibiotics and found vit c to do the trick for him. the gaps diet works at the level of healing the gut, immunity, etc etc. this fit with my understanding of things and worked for him. today... 10 weeks from his regression... i saw a small reduction in symptoms. not sure but fingers crossed that this episode may be settling down again.

We have taken a path of treatment that involves following the GAPS diet(Natasha Campbell Mcbride) and treating infections, minor sore throats etc with vit c to bowel tolerance. Our son had presented with OCD(mild Jan 2011 to increased in Aug 2011) and with this approach we managed all symptoms except he had still refused to use bathrooms other than those at home. Over Christmas(2012) he had a cold and I got quite ill with a flu. While I was out of commission my husband did not follow my protocol for vitamin C and our son regressed to the place he had been 1.5-2 years earlier. It has now been about 10 weeks with no reduction of symptoms. We are back on our diet(stage 4 gaps) after giving it up in Jan. I am not back to supplements yet but will start to include again soon. Just wanted to share this. It is sooo hard to manage regressions. I had worked day in and day out to get him to where he was. There are some positives out of this. My husband now sees what happens when not cared for with diet and vit c. As well it affirmed for me what we are dealing with(PANDAS). I had prevented all reactions(regressions) by starting vit c at the beginning of sore throats etc. I also just wanted to connect and sympathize with parents and kids going through this - the up and down nature of it, the endurance to work with and heal, the extreme crisis this puts a family into. I see that we can become closer through it but it is hard work, isolating, and the rewards are not always forthcoming.

Our approach uses only foods, probiotics and some simple remedies at pharmaceutical strength. GAPS diet guides through diarrhea- restores the gut etc. We did need to bride/take the focus off the changes by giving a special gift after 1 month or 6 weeks. Small encouragements go a long way. Vit c(vit c foundaiton for non gmo/corn source) will manage just about any infection. Add a bit a sodium bicarbonate to buffer. GAPS diet is developed by docs(sidney haas/SCD, natasha campbell mcbride) but is the kitchen sink/grandmother level- all stuff at home that heals and strengthens everyone. Really returning to simple foods, prepared in very healthy way.

We tried the GAPS diet(gut and psychology syndrome) designed by Dr Natasha Campbell Mcbride. It is comprehensive. It is healing the gut which in turn heals the immune, allergies, etc. My son has just stopped tics after 6 years. We started this process Nov 11. Lots of home fermented foods etc. Really worth it. Here are the guides we used. http://www.gapsdiet.com/ http://www.healthhomehappy.com/grain-free-2/30-days-on-gaps-intro-e-book http://gapsguide.com/

what is GAPS? Abx were used because a bunch of kids in his class had strep, and one had pneumonia. In March, he had a pandas episode from strep that happened one month before. Although the main symptoms went away, he started with throat clearing and coughing, when we started azith. The cefzil helped, but it took a while. Then, that went away. When 7 kids in his class had strep and one had pneumonia, and he had little chin jutting tics, we started him on cefzil, and this throat thing was starting. Stopped abx. Then he was kicked in the back of the head and started biaxin for the ongoing chin jutting tics and the overall strep in the class, and then... he had this head/neck thrusting tic that was bigger than we have ever seen. Some weeks later, I started him on OLE along with garlic, probiotics, oregano honey and this head bobbing thing started. Wondered... Hi SCM We had a similar episode this winter/spring. My youngest(8) had developed PANDAS(aug 2011). Although symptoms had cleared with diet based healing we would regress with sore throats, sniffles, exposed to viruses etc. It was disheartening. Then our school was hit with pertusses. Close friends that we drive with all came down with it. I was dreading this coming upon us. I noticed he started the sniffles, sore throat, some coughing etc. I got on the computer to find a protocol to help him/to deal with pertusses as we were already planning to not use antibiotics. With a bit of luck we were off on a 2 week spring break so I could experiment. I found a vit c protocol for pertusses. With vit C the basic idea is to use to bowel tolerance(until rumbly tummy, runs etc) then cut back 500-1000 mg. Our bodies naturally use +++ vit C during infection and can absorb a lot. So the protocol is not a certain amount but what your body needs that day etc. He ended up taking about 10 grams per day. The symptoms began to resolve right away. I cut back. Symptoms returned. So we just stayed with the protocol for 2-3 weeks.

Could you explain the GAPS diet you used? Hi SCM The GAPS diet we used follows a protocol designed by Natasha Campbell McBride. She is a physician(neurologist) trained in Russia. When her child developed autism she found she was at a loss for treatments within standard medicine. She found that there were no treatments offered. She returned to school to study nutrition and received advanced degrees in this area. She has a clinic in England working with kids with a huge assortment of issues that are primarily treated with diet. Her child and many others are helped and recovered in this approach. The foundation of the diet is based on the specific carbohydrate diet that was developed to heal Crohn's, colitis,celiac disease. As these people(and many of us and our kids) gut are not healthy and in balance -complex molecules are not being digested and instead are feeding pathological bacteria/yeast etc. So one part of the diet involves taking these out of the diet(these include grain, some starchy veg-potato, sw pot, yam etc) which stops feeding these critters. The diet as well resembles an exclusion diet when started with the introduction diet. We followed a guide that mapped out the 30 day diet. We found this guide extremely helpful to navigating the challenging early weeks that are heavily based on healing broths, easy to digest veggies, egg yolk etc etc. In addition to completing the "intro" we prepared for about 3 months. For us this meant primarily removing grains-I left in 100% rye bread for the first 2 months of this period. Also removing foods we couldn't eat on the diet, stocking up on what we would need etc. The basis of the diet then becomes the healing of the gut, providing easily digestable protein, simple carbs etc and lots of fermented foods to replenish the good bacteria. We now get raw milk which we make into yogurt(24+ferment), organic meat/bones for soups, make our own ghee etc. It is an education and the focus of our home and life at the moment. http://www.gapsdiet.com/ http://www.gapsdiet.com/INTRODUCTION_DIET.html http://www.healthhomehappy.com/grain-free-2/30-days-on-gaps-intro-e-book

Hi Chemar, One of my children has PANDAS(no tics). My oldest has a throat clearing tic. This post is specifically regarding the clearing of the tic. While we began the GAPS diet for my youngest the whole family has followed this.

my youngest also began ocd symptoms post antibiotics. we chose gut healing with GAPS diet and immune support with vitamin c when needed. we are managing very well with these things. my oldest sons tics have just disappeared-5 months on the GAPS diet. Gone... After 6 years. They have disappeared. unless life threatening I plan to avoid antibiotics at all costs.

While restrictive I would suggest the GAPS diet. The design is to heal the gut which is overwhelmed with yeast, out of balance with bacteria etc. One of the very important features is introducing femented foods to heal and detox. I was highly motivated when I made some connections not only with yeast but also food reactions that indicated an autoimmune response(PANDAS). After 5 months we have had success with tics, ocd, behaviour. We did take 3 months to transition into it(basically removing all grains bit by bit). When our youngest gets too much sweet(fruit etc) symptoms return. We just cut back again and keep going with the diet. I believe the idea is to continue 1 year after the last symptoms. We have learned to enjoy and feel very nourished on the diet. It is very healthy. Lots of good fats, soups, broths etc.

absolutely. Chlorine is a toxin. Toxic exposure can overwhelm the immune system and nervous system. Chlorine gas was used in chemical warfare. With so many good options for treating water-salt, iodine, ozone etc- people should not have to swim and drink chlorine water. My child was tipped over the edge into full blown ocd after 2 weeks of daily swimming last summer. We have had to avoid toxins in and out of the home. Also detoxing and ++ excellent nutrition. We are all doing great but... we still don't expose ourselves when we can help it.

Just noticed my older son has stopped clearing his throat. He has had this tic for 6 years since a strep infection(now 12yo). Basically constant throat clearing. At that time he also developed a post strep arthritis in his left knee which resolved on its own. We started the diet for my younger son who had rapid onset OCD/PANDAS in Aug 2011. His symptoms have improved dramatically since Aug/Sept last year. He is doing great. To prepare for the GAPS diet we started removing grains in Nov 2011. We began the introduction diet to GAPS in Feb 2012. We followed the intro diet for 30 days. Now we are on the full/regular gaps diet-March to July 2012. Just wanted to share that diet healing is subtle but... it also seems to be amazing.

We as well are working to detox and build health. One additionaly item-we have started working with is iodine-Lugol's solution. Iodine is an essential nutriment that most are now deficient in. Iodine is a chelator of heavy metals-aluminum, mercury etc. Chlorine, floride and bromine(heavily used in agriculture and flour additive) displaces iodine in the body creating deficiency. Iodine is one of the most potent antibiotics, antivirals, antifungals, antiparasitics-used in hospitals as a cleaner, hand santizer and during surgery for these reasons. Iodine is required by all cells of the body and nourishes glands. Currently my kids are getting 4mg(50 pounds) and 6 mg(80 pounds). Adult daily requirement is about 12 mg per day. There are a few docs working with this including doctor brownstein in the states.

We had RF and PANDAS - two kids, different manifestations. We have taken the road less travelled possibly. As my youngest who developed PANDAS seemed to become extreem after antibiotics we have decided to go with diet(GAPS) and stay away from antibiotics and are now using vitaminC(whatever dose required with bowel tolerance) to manage all ongoing infections. We are getting better and hanging tight with this protocol. Our pediatrician was completely out to lunch-also canada. Will eventually get back to someone so we can at least get some testing and support along the way. Our best support has been our GP and naturopath.

http://www.garynull.com/home/naturalnews-the-science-of-vitamin-c-the-evidence-of-its-ben.html politics of those wanting to make sure people only use pharmceuticals.

I had earlier this week reported on the results we had with our DS when we gave him vitamin C during the early phase of a pertussis infection. What we saw as a result of this treatment was the disappearance/resolution of some persistent fears/worries/behaviours. When I posted this experience a concern was raised that vitamin C could cause a health concern. As I did not include any references to studies etc I wanted to provide those to parents who are interesting in this topic and would like to explore this as a possible route to treat colds, infections etc that tend to be a huge crisis for children with PANDAS etc. My current favorite site/practitioner is doctoryourself.com and Dr. Andrew Saul but their are many other practitioners, biochemist etc working in this area that you can read about. Dr. Saul is an scientist, nutritionist and educator. I personally like his approach. I find his material comprehensive and always with the research included. These sites discuss both the concern raised that high doses of vitamin c are dangerous as well as stories of families using vitamin c to help their sick kids heal. This is literally just a drop in the buckets as far as benefits etc. http://www.doctoryourself.com/kidney.html http://www.orthomolecular.org/resources/omns/v01n07.shtml http://www.drhoffman.com/page.cfm/552 http://autism.healingthresholds.com/therapy/vitamin-c-ascorbic-acid http://www.doctoryourself.com/vitaminc2.html

Thanks Chemar for the background. I was wondering your history as you have so many posts. As I am not a frequent poster so I do not know people well. In any case, I have done extensive research since Aug 2011 when these issues hit our family. From my understanding of the current research on vitamin C the concerns with kidney stones were found not to be an issue with high doses of vitamin c. I am always interested in studies/primary sources. If you have found studies that have demonstrated this association that would be helpful. When I have time I will happily post my sources for anyone interested. A friend of mine who is a organic blueberry farmer pointed out how ironic it is how much inspection, paper work, testing etc that is required of organic farmers(I think it's great) and how the non-organic farmer across the street who use pesticides liberally never have any such inspections, tests etc. I should point out as well that my child had a major infection(pertusses). We started the vitamin c at the catarrhal stage(sniffles, sore throat etc). This did not progress to the spasmotic stage. I had read that this was possible and in our case it worked. Hopefully, that was clear from my posting. The gift of this experience was the sudden and significant remission of serious worries and behaviours. I certainly do not want to tell others what to do. But I think the value of the space is to be able to hear directly from others what is working for them. Thanks for the good debate.

Everyone has their own comfort level and always best to do your own thorough research. We have gone the super non-medical route starting with home births, no vaccination, avoiding antibiotics and vaccinations. That was our comfort level. We eat organic etc etc. Anyway, I always lean towards non-drug options and am learning to treat my family based on foods-gaps diet etc, non toxic supplements etc. This information is available on line, books, medical journals. You will, however, not recieve this from just about any regular doc's. It is considered fringe, I guess. But then we are getting in to the politics of our current medical systems, pharmaceuticals etc- patents, commerce etc. So absolutely I am biased in this way. Plus I have virtually no experience with any of the drugs others are using. But back to what we are doing .... I have not gotten to the research yet on what the options are for vitamin C. I happened to have had a natural source(cassava) brand at home at the time. From my understanding very little is taken up by the body but that vit c is extremely safe. There are certainly some types that are way more bioavailable. But from what I have read so far basic ascorbate acid/vitamin c powder will be fine. The protocol we used is a bit labour intensive and may not be necessary but if you want to figure out how much you can give your child/your child's body is using-give 250 mg every 20 min until they have loose stools(bowel tolerance). Then calculate how much you gave. Minus 250 mg and give that amount every 3 hours-during the day. Vitamin C is apprarently one of the safest substances to take with, I believe, no known toxic upper limits. The body does pee off the excess. I think if you were really acute it would be fine to give this amount every 2 hours. The body's need of it will continue to fluxtuate so it is not exactly precise. I am now figuring out when my kids need this in abundant supply. They start presenting with bruises, sniffles etc. So I think they will tell us. And when they get enough the bruises should clear up, colds get better. I have eased off on the vitamin c(I was away/husband away etc) but I will get back to it as our results have been profound. We started this about 7-10 days ago. My child had his first day back to school yesterday after being off 2 weeks for spring break. He used the bathroom at school for the first time in 8 months. He used to wait up to 8 hours!!! For us this very exciting. I know that 7,500 mg seems like a lot for a 50 pound 8 year old but in his case his body seemed to be using it. From the research I have seen for therapeutic effects(cancer, infection etc) high doses are the norm.

vitamin c works. No upper limit. Until symptoms disappear. With our 8 year old, 50 pound son, he was getting 1,500 every 3 hours with profound/amazing results.

My son reacted terribly to chlorine-ocd etc(for about 8 months now)-last summer. For him it was the final straw. Anyway, we are having to avoid pools this year for healing. In my research I found that pool water can be treated with iodine/iodide and is wonderful to swim in. People tend to be fearful of iodine based on a study done in the 40's stating iodine caused thryoid issues. Apparently, the science was faulty and that is not an issue. Anyway, it is also an amazing antibiotic, antiviral, antifungal, anti parasitic. Iodine is needed by every cell in our body. It also is a chelater-removes mercury, aluminum etc. I am currently doing a iodine protocol for myself and children.I am taking 50 mg of lugul's solution. My kids take 4 & 6 mg lugol's. Everyone tends to be deficient in this as iodine is easily displaced in the body by chlorine, flouride, & bromine(heavily used in agriculture and added to breads and pastas). Iodine used to be a standard in all doc's offices until the 1960's. No one(pharmaceutical industry) is interested in iodine as it cannot be patented. Freely and cheaply available!

I have not gotten to the research yet on what the options are for vitamin C. I happened to have had a natural source(cassava) brand at home at the time. From my understanding very little is taken up by the body but that vit c is extremely safe. There are certainly some types that are way more bioavailable. But from what I have read so far basic ascorbate acid/vitamin c powder will be fine. The protocol we used is a bit labour intensive and may not be necessary but if you want to figure out how much you can give your child/your child's body is using-give 250 mg every 20 min until they have loose stools(bowel tolerance). Then calculate how much you gave. Minus 250 mg and give that amount every 3 hours-during the day. Vitamin C is apprarently one of the safest substances to take with, I believe, no known toxic upper limits. The body does pee off the excess. I think if you were really acute it would be fine to give this amount every 2 hours. The body's need of it will continue to fluxtuate so it is not exactly precise. I am now figuring out when my kids need this in abundant supply. They start presenting with bruises, sniffles etc. So I think they will tell us. And when they get enough the bruises should clear up, colds get better. I have eased off on the vitamin c(I was away/husband away etc) but I will get back to it as our results have been profound. We started this about 7-10 days ago. My child had his first day back to school yesterday after being off 2 weeks for spring break. He used the bathroom at school for the first time in 8 months. He used to wait up to 8 hours!!! For us this very exciting. I know that 7,500 mg seems like a lot for a 50 pound 8 year old but in his case his body seemed to be using it. From the research I have seem for therapeutic effects(cancer, infection etc) high doses are the norm.

Just to follow up on the vitamin C treatment we are using. My son, after 8 months, finally used the school bathrooms(instead of waiting all day-up to 8 hours). For us this is a remarkable breakthrough. I will continue the vitamin C and provide our outcomes if I notice any. So far we having these results with only doing this about 7-8 days.

I wanted to find out if others have found this. Several weeks past my youngest was exposed to pertussis/whooping cough. My oldest had this already while I was pregnant with my second. Anyway as our friends came down with this I was very worried as my DS reacts incredibly when fighting a bug/has a cold. So I started researching and found a protocol to give high dose vit c to support the immune system etc. We finally found the amount to give that did not cause bowel issues. We gave him 1,500 mg every 3 hours in a bit of OJ. He continued with all the prodromal symtoms of sore throat, runny nose, mild cough etc. As I kept with this dose the symptoms were held in check - no progression and reduction. I reduced this to 5,000 mg one day and the next he again had increased symptoms so I went back to the 7,500mg daily. What I noticed is that he started doing things he had been unable to do for the last year: These may seem minor but if this has struck your family you may not feel that way. Anyway, he could tuck his shirt into his pants, he could use the bathroom without someone helping him(as he feared everything was dirty etc). He has minor sniffles if I reduce the C now but I am inclined to continue to see how much the brain effect can be helped with the C. Would love to hear others experience.

I wanted to find out if others have found this. Several weeks past my youngest was exposed to pertussis/whooping cough. My oldest had this already while I was pregnant with my second. Anyway as our friends came down with this I was very worried as my DS reacts incredibly when fighting a bug/has a cold. So I started researching and found a protocol to give high dose vit c to support the immune system etc. We finally found the amount to give that did not cause bowel issues. We gave him 1,500 mg every 3 hours in a bit of OJ. He continued with all the prodromal symtoms of sore throat, runny nose, mild cough etc. As I kept with this dose the symptoms were held in check - no progression and reduction. I reduced this to 5,000 mg one day and the next he again had increased symptoms so I went back to the 7,500mg daily. What I noticed is that he started doing things he had been unable to do for the last year: These may seem minor but if this has struck your family you may not feel that way. Anyway, he could tuck his shirt into his pants, he could use the bathroom without someone helping him(as he feared everything was dirty etc). He has minor sniffles if I reduce the C now but I am inclined to continue to see how much the brain effect can be helped with the C. Would love to hear others experience.

yes, he was diagnosed with childhood epilepsy last spring after 2 seizure(11yo). Now I am considering that he also has tics and wondering at a connection.

Just wondering if anyone else has had this experience. His seizures happen shortly after falling to sleep. It seems maybe he is sleep walkingn or falling out of bed.