CSP

Hi all, Just wondering if any of you all have heard BCAA's help lower dopamine naturally? Chemar, i see that "Now" sells this do you know anything about the amino acids L-Leucine, L-Isoleucine, L-Valine that is the combo in the BCAA. Thanks for any help, CP

Hi Bonnie, My son gets 10 hours of sleep. If he has been real active during the day he falls a sleep real fast, but on days when it is raining and he had not had a chance to get outside he will take sometimes 20 min to get to sleep. I read somewhere that everyone should get to bed before 10pm. I can't remember why, I think it was you get a deeper sleep if you do. CP

For those of you who do let your children have wheat, I found this to be a very good way to save money. I baught a tortilla press last winter and just pulled it out again, as we have given son back wheat. he really had no change in taking it out. I think it may have made things worse because he had so little to choose from to eat. Anyway I have found that I can use tortillas for so many things and it is cheap. Yes, for tacos, cheese quesadillas, enchiladas, wraps, make pizza, and bake them for chrispy chips with salsa if your child can not eat corn chips. Tortilla press was less then $25.00 I baught an iron one. Recipe for homemade tortillas, 3cups flour 1 tsp salt 1/2 c oil 1 c warm water mix all into a dough. press dough then heat on a skillet just until brown spots form on tortillas, flip and do the other side. I put them in a covered dish and they became soft and stayed warm for a long time. Just wanted to give some ideas for keeping costs down, I spent a lot on tortillas at whole foods and only get like 6 tortillas, not enough for this family. CP P.S. Caryn if you have a recipe for gluten free maybe you could let us know.

vajra, I'm glad to hear you are going to go with the shot from a DR. I have a friend who is a nurse and she goes around to different places giving the flu shot and was told that if anyone wanted to get a thimerisol free shot they would need to see their r. for it. So just an FYI don't just go anywhere to get the flu shot you must ask if it is free of thimerisol. So your child is not sensitive to eggs? That would be my concern. Our ped said not to ever have my kids get the flu shot, not because of tics, but because she really believes the kids need to get the flu and have their own body fight it off. I know that is not true for all children some do need the flu shot. One of the girls I work with she is 18 had to have the flu shot this past weekend because her dad had to make sure he did not get the flu because of I think white blood cells or something. I'm not sure what she said was wrong with him, but her whole family had to have it. She did not feel well and said her arm really hurt, she is 18 and said this would be the last time she ever gets it. She does not have Ts or anything very smart girl and want to go to Penn State. CP

You know it took me a little while to figure this one out, but I think HFCS give me some kind of tingle in my legs. I have never had restless leg, but I came to suspect HFCS in soda that made my legs feel this way right before I would try to sleep. I don't ever get this unless I have a soda. So I don't drink soda with HFCS. My DD is the one who pointed me to this driection after she learned about GMO in Biology last year, and told me soda was loaded with it. That is when I tested HFCS and figured out that was what it was. CP

Hi Bonnie, I know you are waiting for Lyn to answer, but I just wanted to let you know that my son has outgrown a lot of anxiety. He would worry bout a lot of what you said your son does. Maybe a little more since he knows he has a very deadly allergy to peanut and has already had that rescue squad ride to the hosp. He was always thinking he was going to die if he was around anyone with peanuts. Just yesterday he came home from playing football with friends and washed his hands and told me the boys were eating peanut butter. He did not react as he used to, he just washed his hands and went up to wash the football and played for about another 3 hours. If this had happened when he was younger he would have quit and came home. Just wanted to encourage you that I do think these things work out as they get older. God Bless, CP

I just wanted some feed back on this. My son's school pictures for the last 3 years have shown that his color in the face is not healthy looking. At first Kim and I were talking about the shots making him look yellow the year he turned 12yo. Then all the other pics he looks very white and pasty. This year he just looks great very nice even color, and even pink in the cheeks. I put last years pic and this years together and asked all the members of the family if they could tell what was different, they all said his color. I'm wondering if this is because of the Intramax, or the acupuncture. Dr. worked on the liver, but only 4 times. We are having a hard time getting him in at this time of year, son does not like to do this if it is the same time as anything to do with baseball. So we have stopped the acu. for now. What do you all think? CP

lynsey, No, my DH did not tic, really still does not tic. He has 2 vocal words, "BUDDY" and "LOVE" He put these words in between sentences. No body tics at all, but did have them when he was younger. He did not know he had TS his family told him he had "Habits." Yes, my husband is a very hard worker too, and a wonderful father. Always making the kids laugh, and giving me the most tight hugs. I'm hoping our son will be just like him. Did your husband's father have ts too? My father-in-law does, but a very smart man and retired as head of IRS. He is very healthy and enjoys golf every day in CA. I'm very hopeful. CP

Hi Mary, My son seems to tic all the time too, but we have seen times when his does not tic, just not often. His head and eye tics are all gone, but we will be checking ater the othro. apt. in 2 weeks. Last time he was at the ortho was Aug. so don't know if that is why he has slowed. His vocal tics are the ones that seem to never go away. Winter is a little better though. CP

Thanks to all, everyone really has cont. to be a wonderful support no matter what the age of our kids. Lyn, my husband has TS too and has been a rock!!! I use to think he was so far in the TS closet he was in Narnia. I see Narnia is where I would like to go. DS is taking his life where he wants to go and I think he really does not worry about anything. He just plays and does all the things kids do. He plans to try out for the high school baseball team, that will be an all winter tryout after school and Sat. We pretty much know he wont make the team, too many kids in this town with only one high school. But if he did I'll be posting the biggest miracle thread you all have ever seen. I love to watch how the other boys just respect him for his talent, they don't notice the TS. It really makes it so much easier to deal with it when your child does well in something. One can see God didn't forget to give them a talent along with the TS. God Bless, CP

lynsey, i have been out of town, buty saw this post and wanted to thank you. We are going on 3 years with my son who will be 15yo in 2 weeks. I was so warmed with how you discribed your feelings, as I have been dealing with the same. I'm seeing in myself a sense of calm too, and so happy I'm not the only one who has taken such a long time getting to this point. Most of the calm is coming from my son. He just has been dealing with this in such a way I can't even explain. I'm just amazed at his baseball skills, and he told me today he wants to go to the homecoming dance. Not taking a girl just going with friends, but that is a hugh jump from what I was thinking. I thought he would never do anything like this, to scared. I just wanted to ask I hope you had not mentioned this I just don't have time to check all the posts I've missed, but was there an increase in the waxing during times of rapid growth? Thanks again for sharing, CP

Welcome amy, I feel so much for you. It is so hard and when one feels like this is taking sooooo long to fix, it gets to be so draining. I'm so sorry you and your family have been through this, and hope this is the beginning to a brand new dd. Keep us posted God Bless, CP

Since apples are in season thought I would share a recipe you all could freeze while the price of apples are low Apple Butter 4lbs tart apples 2 cups apple cider (I use 2 cups water and juice of 2 lemons because I think apple cider is $$$.) 1/3c cane sugar or 1/2c maple syrup (I have made this for elderly neighbors without sweetners.) 2tsp cinnamon 1tsp ground cloves 1/2tsp ground allspice Cut apples into quarters (do not peel or seed) put into large pot add cider (or the water and lemon) bring to a boil, reduce heat to low, cover and simmer about 25 min until apples are very tender. Mash apples through a sieve with the back of a wooden spoon. Put pulp into a pot add sugar (or syrup), cinnamon, cloves, and allspice. cook on low heat stirring once in a while, for about 4 hours. Until apple butter is thick. cool and put into freezer containers. Makes the house smell wonderful while cooking. Great on toast or rice cakes, I like it better then jelly. Cottage cheese w/apple butter is a great Amish dish. CP

Just want to let you know my husband was able to drink pepsi all his life. since he did not know he had TS, we don't know if the pepsi would have helped. I just know it never made the TS worse. He does not drink it very much now that our son has TS, and we have not seen any change with or without. I don't think he has ever tried the pepsi max. I may tell him to try it. I like to use him for research in the ts dept before I give things to our son. Maybe he can see if it made him feel anything. Glad you were given the 3 hours, I hope you have found something. CP

Welcome , WOW! That really does sound like PANDAS. So he has not been put on any antibiotics yet? I would think that would be the first thing the drs would try? If he is not I would demand some right away. I really hope you will be posting with some good news soon. I'll be praying for Adam, CP

Welcome jtp, Was wondering if you ever though your son reacted to dye. Was the Amox colored? My son always gets a tummy ache when he eats peanuts, and we found out he is very allergic to peanuts. I remember when he had the prick allergy test I could sware this child was off the carts in the ticcing dept. I don't know if pricking him with peanut caused him to wax for so long, but I sure thought so. I'm not to sure how much the neuro will believe in about what we talk about here, but he will do an EEG so you can rule out some things. No sure if some PANDAS moms have anything that would help, and Caryn may have noticed something in yoiur post that may be related to wheat/gluten. Glad you found this place and good luck, CP

SO glad that is working. CP

((((((Myrose)))))))) Please don't ever feel bad, you never know how many people have found relief for their child because of what you went through. If you had not posted no one would know that maybe their child sufferes the same as yours did. Praise the Lord you have found relief for your child. I know my family has struggled for what seems like a very long time with our son. Some days I feel like we can not take this anymore. Other days I look at this child who does not want medication, what would be best for him? At the end of the day I always feel we must be doing the right thing, he is happy. Your little girl needs to be happy, with happy parents to love her, and that is all that really counts. I believe God does want us to let Him work through medication sometimes, and He will bless it. God Bless, CP

Hi Bonnie, The one thing I have seen in both my kids was it was a timing that both seem to hit at around 13. I remember thinking the same as you when both were 12. My husband and I would say for our DD she would never get a drivers lic. He would joke and tell her he would tell any boy who came to pick her up for a date to, "RUN BOY RUN!!" This was before our son had his explosion with ts so we were clueless, and just thought she was being silly the way she was acting. I know my husband would blame me and told me I coddled them to much and that is what caused them to be scared. Now we know better. Hang in there this will get better. CP

Hi Bonnie, I really did want to encourage you about this being something he will get better with age. Remember the chat we had about my oldest (does not have ts) she is so happy and independent. She was realy bad with the throwing up before school and driving my husband and I crazy when she would scream through the house looking for us when all we did was walk to the end of the drive to get the mail. Now Ds (with ts) was not as bad as her but slowly started to outgrow his fears. I think when your son wants to do more things on his own he will not behave like this anymore. I had to do a lot with him, first go to the store by himself to pick me up something. Then it was to use the self checkout. Now he uses the comp. to look up foods that he does not know where they are. Then it was to be a big brother and take his younger sis to the lib. He even went to the bank this summer to cash in his rolled coins and brake large bills all by himself. He fussed but after doing it he does it now all by himself. Last summer we made him walk to Subway with a friend. First they brought the food home and ate in our backyard until they both ate at Subway, now he is very comfortable to eat out with friends. Walks to the high school, and I even drop him off at the ortho. to have his teeth worked on without me. If he has picked at his braces and pulled the wire out I make him call the office to make the appt. He does a great job while on the phone, but has to work up to it. All these little things have really helped him to become an independent young man. Now I'm the one who is telling him to be careful and I get, "OH MOM." So I really think he will get over this, it will take some time, but it will happen. CP

Chemar, How much p5p, b12, and inositol is your son taking at this time? CP

Hi Calicat, I can't remember if you said your dd can not tolerate fish oil, but I have read that is suppose to help with mood. I think it has helped my 2 girls, but they don't have TS. I would also think anything that boosts sarotonin (the feel good transmitter) would work too. CP

Welcome L.D. I know it is hard to wait when you are watching your child doing things he normally does not do, but if this all happened 2 weeks ago you do have good reason to be hopeful. I did want to encourage you on the athlete your son seems to be. That is wonderful he has so many things he enjoys. Thse things will help him release and keep him happy. My son is a wonderful athlete too, he is doing wonderful in baseball. His team won a wood bat tournament this summer, and this fall ball season started out so good for him, coach says he has good hands. My son also take a martial arts class and is doing great in that. He did his wrist stretches he learned in the martial arts before he pitched a game 2 weeks ago and threw 6 pitches to get all three outs. He does not play football because his mother (me) thinks he is too small, but a friend told me he has a bullet for an arm throwing the football. He just went to his first high school football game, as he is in 9th grade, and he had a ball. Thought there was 2 thousand people there, and he just ran around with his buddies having the best high school experience. Keep him doing what he loves to do he will be happy and you will be happy for him knowing he is still enjoying his childhood, even if he does twitch a little. Good luck to you and your wife, it can be hard, but everyday with every effort you put towards helping him is a conformation you love him more then yourself. God Bless, CP

Welcome, kristianne I want you to know I know how you feel. It is so hard to watch as your child starts acting and doing things you have not seen before or thought were very minor, explode into something very scary. You did not mention if you have tried any diet changes? It is good that you homeschool he may be relieved of some stress that comes with school. Have you done any epsom salts baths? Is he taking any vitamins? Take a deep breath and know you have found a place where everyone wants to help you through this. God Bless, CP

welcome awana, I'm not a PANDAS mom, but was wondering if you used probiotics along with the antibiotics? And how is her diet? A lot of kids do find a lot of their symptoms lessen taking out food that are loaded with junk. Do you know what she was eating at camp? CP