Rachel_S

We use 2 cans coconut milk, 2 egg yolks (farm fresh so we don't worry about them, but you could omit them), 1/2 cup maple syrup, 1 tsp vanilla. Mix and put in ice cream maker for 30 minutes. This is a good base for adding anything you like. To make chocolate, we melt 1 cup of chocolate chips (dairy-free, of course) with some coconut milk. Refrigerate til cooled. Then, add to the rest of the recipe above and continue. Good luck!

Thanks, Kathy!

If you could go to any doctor in the country for help, who would you go to? After more than 2 years searching for a cause of the tics in my 10 year old daughter, I am coming to accept they just are part of who she is. They wax, they wane and they seem to be more problematic for me than for her. However, given that some of the testing we've done has uncovered some interesting things (high strep titers, food intolerance to dairy, gluten and shellfish) and a need for detox, none of the interventions have had an impact on the tics. The test results have made me wonder if there is something greater going on that drs with less tic and movement disorder experience just wouldn't look at. To be certain I've checked "under every rock" so to speak, I'd like to make one last ditch effort. I've seen all kinds of specialists (from an infectious disease specialist to a top neurologist in tic & movement disorders, both at Boston Children's) to top functional medicine/DAN practitioners, but have exhausted resources in my area (New England.) I'm willing to travel. I watched this list closely in the beginning, but have been away from it for a while so doctors names are not at my fingertips. Who would you suggest a person in my situation see and why? Any guidance is appreciated -- thanks!

Hi - You wouldn't know unless you have your child tested. Given the ADHD, I can't help but think of a book I read by Dr. Mark Hyman called the UltraMind Solution that discusses how we see neurological and psychological disorder in our kids as a result of physical imbalance. He is a functional medicine doctor. Reading his book prompted me to seek out a functional medicine doctor (an MD, b/c I too took my daughter to a homeopath, but the unlicensed nature of it made me nervous) in my area who did a plethora of tests (including yeast) on my daughter. http://www.functionalmedicine.org/about/whatis.asp On this website you can find doctors by zip code. I'm new to all this myself so can't be more definitive, but it may be worth looking into as it was this doctor who uncovered food intolerance to gluten and dairy that an allergist at Boston Children's never uncovered. I think your hunch that something else is going on in your child may be right on.

I look forward to a response from others too. I've been on this health journey for a year now with my daughter who is 8 and a half. She has a waxing and waning of "tics" -- still, unsure what to call them. When they appeared full-blown, she had a negative throat culture. Until then, I'd never heard of PANDAS or even knew strep could cause these things. After a couple months, a neurologist who we couldn't get in to see right away (b/c I wasn't fast-tracked by my pediatrician) prescribed an antibiotic as he wanted to be sure that IF it was strep causing the tics, that it didn't go to her heart. The day after finishing the round of antibiotics, my daughter complained of a sore throat which turned out to be positive strep -- remarkable b/c up to this point she'd never had one. She was given a higher dose of antibiotics and by day 2 the tics were gone. They stayed away for a few months. Everyone I've talked to said that this was a fluke b/c she didn't have the positive throat culture the week before she started the antibiotics. They insist strep will only colonize in the throat. This includes my pediatrician, an infectious disease specialist at Boston Children's and the neurologist who specializes in tic and movement disorders at Children's. Meanwhile, her tics, although mild, have returned and no doctor will give antibiotics without a positive throat culture. I'm convinced there is something bacterial going on, but getting someone to help me find it has been difficult. Just last week I emailed Dr. Cunningham who, as you may know, is doing research as to what's happening in the brain in relation to PANDAS. If my doctors aren't willing to take it upon themselves to find out what is causing all this (they tell me not to worry, tics come and go in kids), I want to request specific tests to be able to rule out strep as the cause. She told me to have her throat, stool and vagina tested for streps A, B, C and G -- who even knew there were so many?? It is my hunch doctors don't check for all. I hope this helps you (although I know it isn't the info you're looking for) as it sounded like you may be headed down the same frustrating path I'm on with my daughter who doesn't have positive cultures from her throat and doesn't fall into a PANDAS diagnosis without the positive throat cultures. Sidenote: Over the last year, I learned about functional medicine, doctors who look at the body as an interconnected system. We had all kinds of tests done (hormones, toxicity, etc.) My daughter, who has a peanut allergy and been to Boston Children's twice to be seen by an allergy specialist there never did IGg testing on her. The functional medicine doc did and the results showed high for gluten and dairy intolerance. My understanding is that although the intolerance may not be the cause of what's going on, it is possible that the body is working so hard on a daily basis to fight what it recognizes as toxic that when it needs to fight real sickness, the body goes into overdrive to fight and sends the nervous system out of whack. It has made me wonder what the correlation could be with kids who have PANDAS and other immune failure in the system with things like with food allergies. But that's another discussion thread..... I mention all this as I wonder if it would be worthwhile for you to explore functional medicine. http://www.functionalmedicine.org/about/whatis.asp I started with Dr. Hyman's book, The UltraMind Solution, which explains why and how we need to bring the body to optimal physical health for neurological and psychological health. That they are intimately related.

Sorry -- I am asking, perhaps to those folks who don't have Tourette's or Pandas what diagnostic tests were done to determine that they have some OTHER health issue, if any that is causing their tics. I understand to get a PANDAS diagnosis you have to have a strep infection that brings on tics. As far as we can tell, that's not the case with my daughter only that she responded to antibiotics. I want to make sure there isn't something else going on that our doctors aren't considering. Thanks for prompting the clarification!

Can anyone tell me what diagnostic tests doctors have done beyond strep cultures and titer checks (ASO & DNase) to rule out or determine a diagnosis? My 8 year old daughter had a sudden onset of tics last fall. When I took her to her pediatrician she had a negative throat culture. The doctor told us they were stress related and referred us to a psychologist. I've since done lots of reading and visited several specialists all of whom told me "tics come and go in childhood." Long story short, she had a round of antibiotics (amoxycillan) two months later when the neurologist we were waiting to see saw her titer results. When the antibiotic ended, she complained of a sore throat. This was the first ever positive strep culture she'd ever had. (Until this point, I didn't follow up on sore throat complaints .....trust me, I regret that now....) She was immediately given a stronger antibiotic, cephalaxin which ended her tics. Five months later they've returned. We are having the strep/PANDAS avenue checked and specifically sought out a functional medicine practitioner/DAN! doctor. I'm waiting on test results as I write. However, I was not impressed with the labs he ordered and wonder what else he could or should be checking. Is it unreasonable to expect he'd check for inflammation, check vitamin and mineral deficiencies or check seizure activity?? Those are just ones that come to mind. Did anybody have any other testing in relation to their tics? Thanks for any guidance.

I am very new to this, but I am sure I am in the right place asking you for guidance. My 7 year old daughter started abruptly with pronounced tics a week ago. A friend who explores alternative therapies clued me into the strep link so I asked my doctor to test her titres. Although she is healthy and had no strep that we know of, her titres are elevated. Despite that, the doctor doesn't want to treat her saying he'd rather sit and wait. He seems happy to have directed us to a psychologist who will help her deal with stress. I feel confident something medical is going on. Can any of you recommend a course of action, or better yet, a pediatrician or family doctor in the Boston- metro west area who will be open and available to exploring the strep/tic connection. I feel like I'm minutes away from running to the ER at Children's just to get some answers. Thanks for any insight.