

CSP
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I think the kids kind of figure that out as they get older too. My son knows I would not allow him to watch a sports game with another family if they had invited him over. Only because they really did not know what they would have been in for had I said it was ok. Now my son can go to the fire house and watch a game with all the other volunteers and he controls the volume of his vocal tics. The only problem I have with him and he still get scolded for is, when he comes down stairs from his room after 10:00pm looking for something that he really did not need at that hour, making loud noises keeping his younger sister up. Now that makes me mad because he is welcome to do all his ticcing in his room after 10 with his door shut, and her room is on another floor with the door shut, she can't hear it and falls asleep just fine. This to me is just respect and at 16 he is old enough to understand his younger sister needs her sleep, and he could wait to get what ever was on his mind at that moment. CP
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Any thing happen if one misses abx dose?
CSP replied to CSP's topic in PANS / PANDAS (Lyme included)
Buster, He is on a trial of Keflex because we did notics the vocals were less. Thank you for the break down. Sun. is the only day when he is in fire school for 10 hours. The other 2 days are just 3 hours long so not worried about those. I did want to make sure that if not taking the abx on Sun. (or at least missing a dose or two) would I still see good results reguarding the tics. Yes, he is doing better then 2 years ago when he was screaming non-stop all day. He still has vocals but more controlled and not as loud. Fire school has been intense these last 2 1/2 months, he is 16yo and still a Soph. in high school, so the additional work has been tough. He will graduate form fire school at the end of July as long as he passes the final exam, and he will have earned himself 13 college credits if he graduates. So my face will be a tear streamed mess if he can do this. I am told the graduation ceremony is very nice. If anyone would have told me he would be doing this 4 years after his explosion with tics, I never would have believed it. Stay hopeful folks God has a plan for your children. Thanks again, CP -
Hello Patti, I'm kind-of in the same boat as you right now. My son is 16yo and has a dx of Tourettes. I have been wondering about the PITANDS for awhile now and right now he is on a trial abx to see if he does well. (less ticcing) My son exploded with vocal tics after 2 vaccines 4 years ago, and that is what I'm looking into. We do have a history of TS in the family so I have that to wonder about also. I'll let some of the other moms help with your question, as I'm also wondering myself. Welcome to the forum, CP
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Just a quick question. My son is on a trial dose of abx (keflex) for 21 days, so the abx is not treating for strep or anything. (just so you know that) My question is yesterday was the first day while on abx that he had a full day of non-stop phys. training for fire school. He was exposed to 900 degree temp putting out a controlled fire. He stopped for a break and took his abx and he said he felt very sluggish after that. (If you ask me anyone exposed to that kind of temp. on top of a 90 degree day, is going to be sluggish, but hey what do I know) His instructor was yelling at him and cussing up a storm at him for the rest of the day. My son does not want to take the abx on the days at fire school now. So since he is not taking the abx to treat an infection at this time, could he miss a dose and still see good results reguarding the tics? Have you all missed a dose and noticed it did not hurt your child's progress? His dose is 250mg 4 times a day. Thanks , cp
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Thanks again for all the prayers, son is doing well in fire school. He took his pre-test and passed with an 82%. All he has to do now is pass the final and pass HAZ-MAT, and he will graduate. If you all could still remember to say a little prayer for him graduation is at the end of July. I'm getting really excited for him. Thanks everyone, CP
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All, I have been wanting to ask a question about diet and the PANDAS/PITANDS. I was wondering what kind of diet do most of you all follow? Do you have results with a clean diet. I ask because I feel some have sad setbacks and it sounds so much like my son for the 2 out of the 4 years that he has been DX tourettes. I feel just because my son has TS dx I'm not ruling out PITANDS, and I feel I have been through with my son some of the same setbacks your PANDAS children are going through. My son has been on a very clean diet with only Subway as a (need something quick fix) in the not so clean diet. He still tics and can have a bad mood now and then but for the most part he is doing good. So my question is... do you all just do standard treatment for PANDAS, and let them eat what they always ate before the PANDAS dx. Or do you all also do diet changes to see if that helps at all with you child? CP
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Bonnie, I'm so sorry to hear you all are not feeling well. Does this hamper the trip? Yes, praying this goes away SOON! CP
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Central figure in CDC vaccine cover-up absconds with $2M
CSP replied to CSP's topic in PANS / PANDAS (Lyme included)
I know I have been pretty vocal about the use of aborted fetal cells in vaccines. http://www.lifenews.com/nat6272.html -
Hi Patty, Our Intergrative Dr. give me information on a dentist in my area, that practiced more in a holistic way. She was loads of help when I need to know anything in our area that I just could not find in a phone book. Hope all is well with you. CP
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The recipe for fruit sorbet was from a yeast free cookbook that used honey as the sweetner. Are you fighing a huge yeast problem or just trying yeast free out? CP
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Welcome Keven, I do not have much to add because everyone has done a great job. I did want to let you know my son is 16yo now and his ts was bad at onset. We had good results with natural calm and melatonin. Our first medication was the C patch too and my son looked so out of it we took him off after a month. It is wonderful that your son gets so much exercise, that will naturally boost his serotonin. My son also is a huge lover of sports and a great athlete. It has been his saving grace in school because other kids respect him for that. My son has always been a happy kid and not to bothered with the tics, I give that credit to the exercise. He is training to be fire fighter and is a volunteer now. He cannot go into a burning building yet. I have been amazed at how many young men have been sent to the hospital during this training, and my son is hanging in there. I feel TS comes with some sort of anxiety and for him this training is doing wonders for his self esteem. Good luck CP
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I have an ice cream maker. You can make sorbet with it too. Can he have honey? I had recpies for sorbet with honey and not sugar, but my homemade ice cream did have sugar in it. CP
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we make our own ice cream too, and you can make a bunch of ice cream cookie sandwiches in advance, and pull them out of the freezer when ever you want a treat quick and easy. CP
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Patty, If you get a good thermos the instructions tell you how to keep things hot and cold. My kids tell me the soup is always burning hot and they have to wait 6 hours to eat. cp
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(((((fixit,))))) My heart goes out to you I remember those days as if it were yesterday. I will be leaving for the weekend other wise I would tell you to pm me and we could talk. I won't be home until last Sun. Hold strong it will always go down again. CP
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Hi, Ever since my son came back low in iron I have cooked with Iron Skillets. They really are not all that much money, and as long as you keep them seasoned they will last forever. ( "seasoned" means speading some oil all over inside the skillet after every use) I love mine very easy to clean too. I use glass bakewear for the oven. CP
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Central figure in CDC vaccine cover-up absconds with $2M
CSP replied to CSP's topic in Tourette Syndrome and Tics
How on earth did I get that on there??? cp -
Central figure in CDC vaccine cover-up absconds with $2M
CSP replied to CSP's topic in Tourette Syndrome and Tics
Cheri, is this it? http://www.huffingtonpost.com/robert-kenne...303.html?view=s -
Patty, I baught my son a thermos (stainless steel) that keeps hot/cold for 7 hours. You can get large or small size at Target. My daughter said when she opens it up and the smell of soup or beef stew floats through the air, her friends all ask "What is that, it smells so good." So she thought they would think she was odd bringing a thermos to high school for lunch, but all they want to do is eat her lunch. CP
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ameecrem, If my memory is correct I believe the MMR is one of the shots that has "ABORTED FETAL CELLS." This would concern me. CP
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BEAUTIFUL!!! And as God promised, our "CROSS" would never be one inch to long, or one ounce to heavy! With one arm we carry our own "CROSS" with the other we help our friends carry theirs. THANK YOU!
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Dr. Rosario Trifiletti, My son has a DX of Tourette's but I really don't understand the PITANDS, so maybe this is helpful. He exploded with tics after the TDAP and Meningococcal vaccines. He has responded well (less tics) with Keflex at about day 8. Antibiotics were only to treat strep, once the abx were done his tics came back. Have not had a Dr. willing to give me abx for any length of time to see how long he would do well on them. Exploded at age 12 He is now 16 CP
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Thoughts on furry stuff on tongue?
CSP replied to MichaelTampa's topic in PANS / PANDAS (Lyme included)
michael, After my son's T&A and loads of antibiotics he first started with the black/greenish tongue. It slowly turned into totally white tongue with bumps. We used the nystain for 2 weeks with no results. So I had him drink only coconut water and water nothing else. We took out of his diet all foods that yeast feeds on and in a month it was all gone. His tongue is all pink just like before. He did do what Chemar said, "Swish with coconut oil" and spit it out. CP