QsMom

We have had success with CBT/Habit Reversal! My son is 11 and has had tics since he was 5. Last year was by far his worst year for tics so we looked to try some new options. We were referred to a doctor for CBT/Habit reversal. He worked with my son on coming up with competing responses for specific tics. For example, when my son was "jumping" he would have him stand like a soldier and do relaxation breathing. This helped him to stop the jumping (which had become very problematic at school) within a week. My son saw this doctor weekly from August 2012-August 2013. Each week they decided what they wanted to work on. I am still in touch with the doctor but we decided to stop appointments in September because my son was doing so well. We are located the Northern VA area.

LOTS of kids lick their lips and get the ring around their lips in the winter. Both of my kids have had this (one has tics the other does not). For my son, I let him take chapstick to school, which I label with his name and let him keep in his desk. At night, we use Aquaphor, which was a huge help. My homeopath wanted us to use candula cream, but my son did not tolerate it well. He said it stung. Once the irritation went away (with the Aquaphor) he'd stop licking. So, preventive care and getting right on top of it when it started was important for us. Fortunately, this winter we have not had to deal with this one. Good luck!

Caryn and CSP, SO glad to hear that your boys are doing well! I've not been on the boards for a while but decided to stop by today and saw your posts! My little guy continues to do great, and he's also really progressing in 2nd grade. His immune system seems to be rock solid, and he's not been sick once this year. H1N1 was rampid in his school in November, and I was so pleased that he did not contract the bug! I've taken him off all of his supps except his multi, probiotic and his Omegas. Like both of you, I NEVER would have imagined three years ago that he'd be this healthy and tic free. Cheers to a new year and to all the outstanding moms and dad on this board! Q's Mom

I wanted to report in on this topic of pools and tics. Last summer, my son was reacting to what we thought was the chlorine in the pools. So, we ended up keeping him out of the pool most of the summer. Because of that he was severely behind his peers in swimming at the beginning of this summer. All summer, he's been in the pool several times a week and he's doing great! After researching toxocicty levels in sunscreen we also swapped out our sunscreen and ditched his lifejacket (also was probably toxic). We are keeping up with epsom baths after pool time for good measure. I was also SO proud of him yesterday when he swam a lap in the deep end all by himself. This was such an accomplishment! I wanted to share this bit of good news and hope with you!

I did not see a tic increase when we began the rememdy.

Carolyn, My Whole Foods just started carrying Almond Breeze in the refrigerated section. It is by the half gallon and has 30% calcium per serving verses the 20% per serving for the smaller box. I was excited to see this b/c we watch my son's calcium intake. It also tastes MUCh better and has to be better with less preservatives. We also like the coconut based yougart (SO Delicious brand) which are high in calcium and magnesium. I also noticed that my WF is carrying coconut based milk (it is in the same line as the yougart), but we've not tried it yet.

I found the links to Dr. Sims videos on U TUBE. There is a series of 4 videos. They are worth watching. I'm curious about the cost? And, how this device looks/feels for the patient? From the pictures it looks very bulky. Nonetheless, I think this is very interesting and I'm so glad that their are doctors out there that are taking an interest in TS and tic disorders. Everyone keep us posted on your experiences!

Shy, Examples of fiber are: fruit and veges (skin and pulp), flax seeds (also good for Omega 3), quinoa, legums/beans, whole grains, etc. When you go on a GF diet, many times, it becomes harder to get your daily intake of fiber b/c of the elimination of wheat and other GF grains. Some doctors recommend 35 grams of fiber per day, and this is really hard to acheive! For us, I add flax to meatloaf, pancakes, muffins, and anywhere possible. I also serve black beans, limas, or northern beans frequently. My son loves GFCF bean soup made in the crockpot! Also, watch the GF foods ... many replace wheat with corn or soy as the main ingredient. I always look opt for GF foods with flax, sorghum, quinoa GF oats or rice. These GF products are harder to find but help to vary the diet and tend to be higher in fiber. I hope that helps.

I've been getting a lot of questions and private emails about the pleos so wanted to make another post about our experience. Hopefully it will be of help to someone. In response to my homeopath determining via muscle test that my son had PANDAS, we used the Pleosan strep, pleosan pseu, pleosan not combo. We used this for about 8 weeks 2xs a day, 3 drops of each until she confirmed via muscle test that the strep was gone. We then have used pleo san com for about five months (4-5 drops, 2x a day). At the same time, I also had a pediatrician run titer test which came back negative. In the two years my son has had tic issues, I've NEVER had a positive strep test. Unfortunately, when my son first started ticcing, my pediatrician only ran a rapid test. With that being said, after much consideration I decided to go ahead with the Pleo rememdies. Had I had a positive blood test, I may have gone a different direction with treatment. My son also takes and fish oil, Cal-mag. From a dietary perspective: we are GFCF, Feingold, organic where possible and limit corn. My son takes epsom baths every other day and our house is as green as we can make it. My son has had an overall really good year. His health is much improved. He hardly gets sick. His tics/OCD are generally light and are generally noticable only by me. Because of all of this, I've actually cancelled my last 2 homeopath appts. and he has not seen a dr since early December. With all of this being said, it is hard to say what has helped him the most. His body is definitely healing but I'm not sure whether the vitamins, the diet, the pleos or the clean lifestyle has been most beneficial. If you've tried pleos, I hope you'll also post your 2 cents here. When we were making our decision as to whether to give this a try, I found very little info on ACN or even on the internet about them. It would be great for PANDAS parents to have some new options.

Definitely visit the PANDAS section of ACN. Those who frequent that section deal with strep on a regular basis and can answer your question about testing. You would want to get a blood test NOT the rapid test strep test. I'm curious about the rash b/c strep can come with a rash which I understand can be sand-paper-like. For the neck tics, try Epsom baths or Magnesium cream. They really help my son when he is having neck or shoulder tics. Good luck!

Shy, I'm curious, is your child on a special diet? Prior to taking away gluten and casein, my son had constipation issues too. Once we changed his diet though, these significantly improved. Also, when gluten free, I really had to make sure that my son was getting enough fiber and drinking enough fluids. So, I've added fiber where ever I can to help straighten my son out as well as encourage water drinking. Interestly for us ... when my son gets constipated it is about the only time you really notice his tics. Sometimes, I add a little extra magnesium also to help move things along. Black beans seem to work too! Good luck!

The conference is fastly approaching .... any one else going??

We had an issue with "pools" last summer. My son developed a head nodding tic while in the pool which progressively got worse while we were at the beach seemingly from pool exposure. At first I assumed it was the chlorine/chemicals in the pool, but then also considered it could have been the life jacket he was wearing or the sunscreen he was using. The glare on the water could have been a contributing factor too. We started epsom baths after every swim and changed to a natural suncreen, got rid of the life jacket, and added some sunglasses. My homeopath had him do a detox. The tic faded and has not come back. As a side note, we had been to Disney earlier in the year, and my son was tic free. He was in the pool several times, and it did not seem to bother him. I'm interested to see how he tolerates the pool this year. We'll see.

I'm going! CSP and Caryn- I'll get in touch with you as the conference gets closer and hopefully we can meet!

Max's Mom, It has been some time since I've been on ACN so I'm glad I checked the site today. In response to your question, yes I did decide to treat my son with the protocal that my homeopath suggested. We finished the pleo san strep, pleosan pseu, pleosan not combo some time ago and are now on the pleo san comm. I have to say that my son's tics are extremely mild to non-existant to the point that I cancelled my every 2 month homeopath appt and pushed it out 3 more months. In our last appt. her muscle testing said that his strep was gone. Now, with all that being said - we did NOT have a blood test which confirmed strep, only a muscle test. So, i'm still not 100% that he has/had PANDAS and while I was skeptical I went forward with the treatment. What I can tell you is that his tics are not an issue now, his digestion is good and his immune system is working. He's hardly been sick (knock on wood) all winter. We went from missing weeks of school last year to him only missing 2 days the entire year so far. I'm not sure that the pleos were the silver bullet or if his immune system is just working better now- he eats an almost organic diet and we are GFCF/Feingold. If you have more questions, email me on ACN and we can chat more. I'm curious how these work for you if you move forward.

Caryn- Thanks for the info. I've also sent emails to a few of the companies that do testing to see what they say as well. I'll post what I find out. You also brought digestive enzymes ... I'm wondering if they will skew the results? My son takes them with every meal. Faith- Overall, we've had a quiet year with the tics which I am very thankful for. When we started the GFCF last September the tics stopped competely for about three months. Then around Thanksgiving he got bronchittis and developed a hand over mought tic (like you'd do when you cough) ... but mostly the tics were non exsistent or at a level that only a mom would notice. In the summer he had what I would call an episode of neck/shoulder tics. We then have had another episode of tics right before school started that started with heavy eye blinking which turned to mouth stretching. My son's homeopathic dr believes he has pandas, but she tests with muscle testing to determine this, and I want to start getting a more conclusive test. I found a pediatrician in my area who identified and treated PANDAS with a friend's child and this dr. suggested I get a titer test for my son as a baseline. Since we are doing a blood draw, I thought I'd go ahead and do the IGG since you use the same blood draw. I'm curious to see what shows up. So, I do think the diet helped him SIGNIFICANTLY -- we saw an immediate reduction in tics and over time I think his immune system has strengthened b/c he gets sick a lot less. At the same time, it's been a year so if he can now tolerate some milk and wheat products, I'd like to open those doors. Regardless of what we reintroduce, we'll continue to follow a Feingold-like and organic food diet for the whole family.

My son has been on a GFCF diet for over a year. We have also been mostly corn free since April. He has to do some blood work, and my dr. as agreed to also do an Igg in addition. Does anyone know how long and in what quanities I need to reintroduce gluten, casein and corn in order to have them show up on the test? Anyone had an experience with this? Thanks for your feedback.

Pat/Guy - Thanks so much for your responses. It seems like trying this can not hurt, but at the same time it makes me nervous that no one else has heard of these remedies or tried them. I know that there are many smart parents on this board that have used a variety of doctors. What I'm struggling with is that I can't find a lot of info about these rememdies or any evidence that they work and torn between trying this or trying to find a traditional dr who can rule in or out PANDAS from conventional blood/culture testing? When my son first started exhibiting symptoms, I printed off PANDAS info and took it to our pediatrician (not the dr recomending the homepathic remedies for strep) and he questioned whether or not PANDAS even existed. He did do a rapid strep test, which came back negative. So, any other feedback is appreciated. I'm stuck.... You can post or email me on ACN. Thanks all!

I wanted to see if anyone has used any homeopathic remedies for strep - specifically Pleosan strep, pleosan pseu, pleosan not, and/or pleo san com. After a very quiet time, my son has had two outbreaks of tics, one in June and one this month. Through musle testing, she feels that strep is my son's #1 issues and possibly PANDAS. She wants to treat my son with Pleosan strep, pleosan pseu, pleosan not combo for 6 weeks 2xs a day then and/or pleo san com for one year. Has anyone used this method successfully? As a brief history, my son first started ticcing in April 2007. After implementing GFCF/Feingold, magnesium supp, and a few other things .. his tics stopped in Sept. 2007. We had minor tics here and there in that winter and then in June had an out break, which dimished then another outbreak in September. Suggestions? Experience with the homeopathic remedies listed above? Any feedback is appreciated. Q's Mom

It is wonderful that you were able to find something that helped your daughter. Every child is so different. If the detox angle is working, i wanted to suggest that you try to add some epsom salts to her bath. Also- Trader Joe's sells a nitrate free hot dog with very few ingredients. I am fairly certain that they did not contain milk. We've tried them for summer bbques, and they actually tasted good too. You might want to give them a try if you have a Trader's nearby. Good luck!

GFAM- My son (and our family) has been on Feingold for a year. I have to say that I am a fan. It looks like FailSafe takes the Feingold premise of eliminating processed foods, dyes, artificial colors and sals ... but then resstricts a number of other fruits and veges, which could be a missed opportunity for vitamins and eating whole foods. Failsafe also encourages milk, cheese, ect. We are casein free so this diet would not work for us as their would be not much left to eat. My kids love veges - Broccoli, asparagus, cauliflower, carrots and LOVE fruit. I also really like Feingold, because of the support system that you receive when you buy their program. The shopping giude they send you is very specific - down to the brand name of what is "safe." They also have chat boards for members where you can post ideas and recipies. This was very helpful in getting started. I'm getting ready to renew my membership just for the continued support since product ingredients change. Good luck!

Cheryl, Welcome to ACN! My son started ticcing in the Spring of last year. He was almost five at the time. Last year, we had a rough Spring and Summer of constant ticcing - motor and verbal. He also had very dark circles and digestive issues. He also was sick a lot, which I beleive was from an impaired immune system. It took me about four months to really nail down what his triggers were. For him, it was a combination of gluten and casein, dyes and sugar, ect. We implemented Feingold and went organic and are now also avoiding corn. We confirmed that he was "allergic" mold, so being mindful of those, have cleaned up his room. We have a very successful year since last September of light to no ticcing. We did encounter what I would call an "episode" that I have isolated as chemical expose to the pool. We joined a pool and spent several weeks at the beach and my son developed a strong head tic - like we were seeing last summer. We have been out of the pool now for 3 weeks and the tic is still there BUT it is being less in frequency and intensity. I'm not sure that anyone but me would notice at this point. Here are some things to think about - - What kind of multi-vitamin are you giving your son? Many of them are loaded with extra things. I have had to change my son's a few times this year based on his food sensitivies. - Try Epsom salt baths to detox if you go to the pool (or even if not - these are great) - Is your child exhibiting other symptoms- i.e. digestive issues, dark circles under eyes, low energy, restless sleeping? - Is he wearing a life jacket at the pool? Could the plastic be effecting him? - Could the sunscreen be effecting him and not the pool? - Your Omega Supp - is it fish oil? Some kids can not tolerate fish oil and it makes them tic more. My son is fine with it and I can see a difference in his academics now that he has been taking it for several months. We have been at this now for 16 months and I have to say, my son has come a long way. With the exception of the "episode" we have just had, he has a VERY mild to no tics year. His vocals went away in September and have stayed away. His overall health is much better- dark circles are gone and he has not been sick (knock on wood) once since March. Good luck ...

Bonnie, I can empathize with the focus issues. We use fish oil so i really can't comment on other supplements. Since we started the fish oil though, I have seen an increase in attention. Here are some other thoughts: We are trying Tae Kwon Doe- the teachers are working with my son on eye contact, confidence and following directions/paying attention. Maybe a good one to look into since you homeschool? How old is your son? Would he try yoga? I'm looking into yoga for my kids ... yoga has lots of benefits for kids and parents: flexibility, focus, relaxation, and a fun activity to do together. A thought on golf- after 9 holes, did it get hot or was he having an off day? 18 holes is a long time for anyone to not loose focus, especially if you are not hitting well. Good Luck!

Greyhound, Like szcasey, a restrictive diet (Feingold, casein and gluten free, no corn syrup) has been VERY powerful for us. We also have a supplement routine, but I feel at least for us that the diet is the most impactful. If we miss a supplement, I do not see tics in my son. If he eats something with dye that he is not supposed to, I ALWAYS know ... it shows up in behavior, loud talking, hyeractivity, and sometimes a mild tic that a mother will see. You might also want to consider a probiotic- you may have had this in your list but I did not see it. At least for my son, a digestive enzyme has also helped him to better process food. We went from mutliple tics all day/every day (this time last year) to an occasional very mild tic after we changed my son's diet. In general, his health too is much better now. He gets sick less frequently and no longer has dark circles under his eyes. Good luck in your journey to figure out what works for you!!

Jenny C- I'm glad to see that you are getting clarity and help from some doctors that you are comfortable with. That is great news! Good luck in the coming weeks and keep us posted on your progress! Q's Mom