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.