sriramcs

For my peace of mind, I might end up doing one anyway with a neurologist. If nothing comes out of it, at least I can check that off the list. I just needed to know if it could be a possible symptom. Still educating myself, I still have so much to learn about her condition. The other thing I have not done is go dairy or gluten free (have cut back though). Do I need to? I have eliminated artificial colors, preservatives in food like BHT (going organic pretty much for most stuff except vegetables that I can steam), stayed away from fast food, increased magnesium intake with nuts and greens (and epsom salt baths), increased probiotic intake, increased garlic, turmeric and ginger intake etc. for my child. It still looks like there is plenty of inflammation left. Are there natural anti-inflammatory supplements that I don't need a prescription for that I can use? Is there information on child dosage for those? Just curious since I am certain folks here have witnessed a whole gamut of knowledge passed around.

Mike, You have no idea how much this input means to me. Thank you so much. Sriram

Concerned Dad here. Can someone here tell me if their kid with tics zones out for about 15 seconds and then gets up and goes about doing their stuff just fine? The teacher has told me about those blank stares in school but so far, her math, reading and writing skills are in tact. My daughter has motor tics since Christmas and her motor tics have gotten slightly better in terms of a lower frequency of them (she is also able to control them while interacting with grandparents/neighbor kids somehow, I don't know how). However, lately, she has been zoning out more obviously on the carpet or even sitting on the playground for those 15-20 seconds and then resuming activity/playing. I am convinced she is a PANS kid. Her cognitive skills are in tact so far. However, I do want an EEG done to rule out absence seizures. When I wave my hand in front of her during those 15 seconds, she somewhat responds with a few blinks but not totally. Sometimes, it can be 10 seconds, sometimes it is 15 seconds but most of the time, it does not last even 20 seconds. There are no convulsions, whatsoever. What would you suggest my best course of action should be? Please, any input would be greatly appreciated.

Terms like "marketing ploy" (something you used in a different thread), "essential snake oil" are terms I associate with shooting the messenger. I have made clear I don't have the answers, yet people want answers, so I finally shared all I know and see. I am not employed by Young Living, and I have the same testimonies to go by that you have read, and I am in week 2 of this effort, and need to devote my positive energy to my child. My stress levels as a parent are obviously getting to me, sorry if that came across as offensive. That is all I can say, man.

This probably will be my last post on this forum for a while because I prefer to surround myself with those that won't throw stones at what I perceive to be pointing them in the right direction. I don't know the answers, all I can tell you is that I am trying. You don't know me and I don't know you but I will say this. I will give you this info that I am using on my daughter right now but let me qualify again that I am not an oil expert and I got this plan from someone who treated his son for PANDAs and got it to work, that is my strong disclaimer. I don't need any of your money or need to sell oils to any of you, period, let us get that out of the way, I am blessed with a good only primary job and recently signed up for a Young Living account just to get essential oils wholesale instead of retail. I just want my 7 year old daughter's motor tics to go away, that was the only reason I joined this forum. You can check my posts prior to even going down this route. My daughter's tics symptoms include shoulder shrugging, neck rotation, playing with her hair etc., I am sure a lot of you can relate to that. To provide info on what I am exactly using on my daughter now (all essential oils, I purchased from Young living) : 1) I do a skull suture application overnight of Frankincense (anti-inflammatory) and Clarity (brain friendly oil). Clarity can be substitued with BrainPower as well. Skull sutures are easier to spot on kids' skulls than the hard ones of adults. The skull sutures are the quickest way for the oils to infiltrate the blood brain barrier. 2) I give her 1 ounce two times daily of Ningxia Red, a wolfberry extract juice from Young Living that has powerful anti-bacterial and anti-viral properties to clean her gut. I give her Mightyzymes, a young living supplement to aid with digestion since Ningxia Red has antibiotic properties and I have to balance it out with digestion aids and I also give her daily probiotics. 3) I apply the capsule formula (Melaleuca Oil, Cistus, Exodus, Copaiba, Balsam Fir, Lavender, Thieves, Thyme and Oregano 1 drop each) to the base of each foot overnight. I also do a combination of easy breathing oils like Lavender, White Angelica, Peppermint etc. in a diffuser by her. 4) I apply the raindrop massage with 2 drops of all the above oils on the back of my daughter once a week in about 10+ steps of the raindrop massage (popular massage used by massage therapists). An increase in initial tics and abdominal discomfort are symptoms that are possible that you should be prepared for and not get discouraged by, a lot of detoxing has to happen before the body heals. I am not jumping to my medicine bottles like I used to before, letting the body heal itself naturally, at least during this period of essential oils. I want to treat anything and everything naturally as much as possible (like tea with ginger for upset stomach etc.). Do not chase symptoms, focus on the cause. This has been echoed by countless parents in their testimonials on the www.pandashopeforhealing.com page. I have been using it on my daughter for about 2 weeks now and so far, I am noticing the same stuff those parents are noticing. I am hoping that over time, these tics will be gone. Right now, there are lots of good periods when she is not detoxing heavily, like 2 hours approx. without tics, so I thought I'd share, I'm holding on to those positives for a start. Good luck to all parents!!! I'd be glad to answer PMs anytime you want. I know the feeling of a parent that is vulnerable, which I am now, so many sleepless nights and anxiety sweats. But I have to press on and try my best, whether you believe in my approach or not.

I think you should google "essential oils and blood brain barrier" and will find a lot of positive connections as to how essential oils have an impact on the blood brain barrier. That is what got me going in that direction. Hopefully, I can give you some positive news in a few months. Here are some articles I found that I thought I'd share (there is a lot of science in it): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3796379/ http://www.rnoel.50megs.com/pdf/theblood.htm Here is a video that I found: https://www.youtube.com/watch?v=cycfWaWnrkU

Go to www.pandashopeforhealing.com and click on the free phone consultation link. Once you talk to Will, ask all the questions you want. It is amazing how much Will has dived deep into PANDAs and essential oils because of what he went through for his son. I even Skyped with him to make sure he is who he says he was, I am sure a lot of doubting Thomases here would do the same too given the stakes .

I am not an expert on oils, so I am following Will's advice on this. There are certain oils that are favorable for the brain like Brainpower, Peace and Calming, Clarity, Valor, Vetiver etc. and then there are certain oils like Frankincense that are anti-inflammatory oils. A combination of those are normally used. Each child is unique. Will normally formulates these plans based on what symptoms the child is showing (because Chelsa's son had a different kind of tics than Will's son and so have different ones) and provides you those. I'd suggest you contact Will directly through his website: http://www.pandashopeforhealing.com/ Look at the testimonials out there. Click on the 'free phone consultation' link, that should get to Will soon. Will has made it his mission to educate and help other families like mine and others about PANDAs and the usage of oils.

My daughter developed motor tics post flu, post Tamiflu. I have been in touch with another parent whose son, co-incidentally 6 got the flu before Christmas time and developed OCD and motor tics. That was four years ago, in 2010 December. Now, her son is free of the tics but still struggles with OCD and sensory issues. However, she also has a friend whose daughter developed tics post flu, without Tamiflu. So, if you are asking for proof that Tamiflu did it, I cannot say it did it. But it did put something over the edge, I strongly feel. If you read closely, Tamiflu cuts down the recovery time by only 2 days. But it is prescribed for 5 days typically. If I were advising a parent, I would say take it for 2 days and throw it away. It will keep the virus from multiplying with 2 days of Tamiflu in their system and let the body's natural antibodies kick in after that. My daughter still has those tics from 2 months ago (though slightly less frequent than what they were), and thankfully no OCD symptoms so far. I have gotten her diet straightened out right away once I noticed the tics and now, I have her on essential oil application every night to the bottom of her feet and a raindrop massage once a week since her tic symptoms are not terrible (once every half hour or hour). This is my personal experience. Good luck.

I ran into someone in upstate New York named Will Cook who had put his son through 2 years worth of antibiotics before his son's white blood cell count dropped and he ended up going down the path of essential oils. He has this thing patted down to a science, the usage of the essential oils, and detoxing. He is a pastor who spent a lot of the last 3 years studying about PANDAs and PANs and in 4 months of essential oils usage, his son came out of the motor tics, mood swings etc. and has never looked back. I am in personal touch with him and he is helping my daughter with a personalized plan. He is not a doctor, he is just a pastor but he is currently helping about 100+ families. He has done lots of research, as you can see on his website below. He saw the video of a Mom named Chelsa applying Essential Oils to her son Joey that took away his motor tics. Chelsa helped Will and now he is helping so many families of parents with children that have PANDAs or PANs like symptoms. Will keeps in touch with some prominent PANDA doctors in Connecticut and New Jersey and publishes articles on his site that he gets info about from them periodically. He had hit rock bottom with his son when his white blood cell count dropped to such levels and felt he had to seek alternate treatment. That is how his essential oils investigation and depth of information on his site came all about. Just thought I'd give you some background info if that helps. In case you wanted to see it, here it is: Video of joeys journey with motor tics, taken by his mom Chelsa who helped Will Cook initially: http://motivatedfamilies.com/joeys-journey-essential-oils-for-motor-and-verbal-tics/ Will Cook's page regarding Pandas and articles and testimonies: https://www.facebook.com/Pandashopeforhealing While I am not 100% certain my kid is a PANDAs or PANs kid, I do know she has motor tics following the flu/Tamiflu, and has had some mood swings in the past though none like a meltdown. She does feel calmer with the essential oils and sleeps well since I started it a week ago, the tics still persist. I feel that I need to exhaust every natural means along with diet to deal with the bacteria and viruses. I am giving the Essential oils a few months try to the best of my abilities. Wish me luck. Best of luck to all of you parents!!!

The grimacing of the mouth I saw post Christmas is pretty much gone now. All that is remaining is neck jerking or a slight head rotation. That has been over the last 3 weeks since we cut down the sugar and ramped up our healthy eating habits. I will keep a close eye on it, of course. She just came back home scoring 98% in her weekly math class test. As a first grader in high ability, she added numbers in the thousands in her class test last week. It is mighty hard looking at everything with a cynical eye but I am trying my best to be objective and not jump to conclusions. I get weekly updates from her class teacher regarding her tics and mood too, and so far so good.

Yes, that is what I meant. Blood testing to see if there are any auto antibodies. Can you get blood tested without a doctor's approval? When I first brought it up to the pediatrician 2 weeks ago, she asked me to wait till the neurologist appt. on the 20th and let them determine if she needs that. My gut says I need the blood testing done. I have never had her blood tested whatsoever since she was a baby, during the first 3 months for serious ailments, and that is about all she has had done on the blood testing front. if you want to get her tested, make sure to go to the apt prepared. make your case that this is Pans like auto-immune reaction. argue that you want to rule it out, if nothing else. (this if the neurologist is not PANS friendly) point to family history -- tics run in families as do autoimmune conditions. have a list of blood tests you want performed ready. Went to the neurologist. They did their cognitive and motor tests. My 7 year old daughter tested fine on all fronts. I asked about OCD, they said that they did not recognize anything from our answers that can pinpoint to OCD but did say to keep an eye on her anxiety. They said girls are more likely to get out of this than boys based on data for transient tics, however anxiety and OCD reduces those odds. Though we told them and they observed that she had only motor tics, they asked her about if she had any urges to make weird noises or clear her throat (I understood why they wanted to confirm). She said No to both those. I talked to them about PANs and PANDAs and they said if we did not know exactly what we are looking for, we may be asking the wrong questions, especially when there was no family history of tics. They did schedule a follow up in 6 months. I am a little torn on what to do but I have not exhausted all non-medication possibilities yet in terms of diet and essential oils, which is probably what I will focus on heavily the next six months.

Is this a "specific chiropractor"? (specializing in brain stem / spine alignment?) I have taken my daughter to one for an evaluation several years ago. He said that there is significant stress in her brain stem area. My pediatrician laughed from it, and I never followed up. I am interested to know more about this. With my pediatrician not being of much help, I am thinking if we should take her anyway. Yes, this chiro specializes in spine alignment. They do an X-ray followed by EMS (electro magnetic scanning) that shows their neck curvature (and spine too), how much it deviates from the normal 45 degrees (my daughter's was 23 degrees) and work on correction. The C1 vertebrae had some issues, and that is an area connected to the Otic ganglion, a nerve responsible for so many of the head and neck movements and logically might have some impact on tics too. That is why I went down that path. I have a co-worker with 2 boys - one who has juvenile diabetes and another who has had seizures in his life, this chiro treats them both and has done so for a couple of years. My co-worker told me that he was skeptical in the beginning too but once he took his 2 boys and his adopted girl to that chiro for the last 2 years, they rarely get sick since their nervous system (which is connected to several organs in the body and controls pretty much everything) and even if they do get sick, get out of it fast. The situation my co-worker dealt with his boys is what prompted me to give that a shot for my daughter's tics.

Yes, that is what I meant. Blood testing to see if there are any auto antibodies. Can you get blood tested without a doctor's approval? When I first brought it up to the pediatrician 2 weeks ago, she asked me to wait till the neurologist appt. on the 20th and let them determine if she needs that. My gut says I need the blood testing done. I have never had her blood tested whatsoever since she was a baby, during the first 3 months for serious ailments, and that is about all she has had done on the blood testing front.

Since you asked, let me list them out pre-flu and post-flu: Tics - neck and head jerking along with facial grimacing None before flu and Tamiflu Started once she went off Tamiflu and got over the flu Have reduced to neck and head jerking probably once in 15 or 30 minutes and increasing in frequency during times of stress or high activity. Facial grimacing has pretty much died down, just the neck and head jerking remain. If not for the tics, I would not even be here. OCD tendencies Like I said, she has been an anxious kid for the last 2 years, very conscious of what teachers think, doing things by the book so that she does not want to get in trouble. We have re-iterated more and more that it is OK to not be perfect and have requested that teachers say that once in a while too so that she can hear from them. She has responded well so far and is not too worried about it since she went back to school after the winter break but we will keep an eye on it. My wife volunteers at school every Monday and one mean boy in my daughter's 1st grade class told my daughter that her Mom is fat and so is his. Go figure, kids are nasty at every age. That has led her to ask more often if she is fat. I tell her that she is just fine for her age and is in the 50th percentile in weight and 75th in height. I tell her it is best to eat healthy and re-evaluate every few months instead of worrying about it daily. I think it is more a factor of that boy joining her class in October and making those comments than OCD. I told the teachers to keep that boy away from her to reduce her stress levels. Separation Anxiety My wife or I always have slept with her for the first 10 minutes before letting her sleep by herself and she normally falls asleep fast enough when we do that, no different before flu, no different after flu. We realized the Epsom salt baths were getting her actually energized and she had a harder time sleeping, so we are saving it for the weekends and Fridays. Her sleep patterns are pretty much the same. Maybe we have enabled her but I do not see a reason to change it up at this point while she is having tics to introduce more stress. Frequent Urination Nope. She sleeps through the night without the urge to go to the bathroom despite us increasing her water intake. So, given these facts, I am not jumping to conclusions towards PANS since all her abilities (math, puzzle solving, reasoning, cognitive skills) are all 100% functional. I will get her tested and see if she is deficient on any front. I will explore some essential oils that I have heard work for kids with tics and then go down the integrative medicine route if that does not work. I will keep you all posted how it goes. I will keep an open mind as advised and wish all parents on here luck with their kids as well. You parents are a big source of my strength, let me stress that .