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Hope

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Everything posted by Hope

  1. Julie, You have definitely come to the right place. There is so much support and positive information here! My son is now 11 and started with vocal tics around 8 years old. Eye blinking, touching objects, smelling fingers, itching nose, etc...followed. It all started with a medical crisis involving my husband. DS was anxious when daddy was hospitalized and the tics started. I believe they would have happened at some point but this was the trigger. Looking back I don't know how I got through it all. But I had no choice. As a mom we just have to keep doing and take care of our family the best we can. I like how Megan said that we are in the driver's seat! And, yes, it would be wonderful to have a chauffeur sometime!!! We chose the holistic route. We found out a year ago that he is intolerant to wheat, casein (dairy), oats, potatoes, lettuce, apples, beef, chicken...you name it! It has been hard but almost a year later I can tell you that it is making a difference. Well, something is. He feels so much better! He used to have constant stomach and headaches. They are very infrequent now. The tics are hardly noticeable anymore. Not completely gone but certainly manageable. Someone meeting him for the first time would never know. Teachers have not had any concerns at all this year! We also cut out all artificial everything. No colors, dyes, preservatives. We became involved in our local Community Supported Agriculture program and now coordinate a pick-up at our church. So all organic as much as possible! The CSA makes it affordable. The doc we see is an MD and naturopath. He started ds on GABA and 5HTP. They seem to be making a huge difference! He tolerates them well and sleeps much better having 5HTP at night. We also do Natural Calm, Bs, Fish Oil, Zinc, Magnesium Taurate. I was nervous when we started fish oil as I read it can increase tics in some kids. I believe it had the opposite effect for us. Increased that to twice a day and seems to be helping! I can't tell you what a different kid we have today. In fact, he is participating in the school geography bee this afternoon. He is the choice for 6th grade winner. We will see. I am just proud of him for doing his best and participating! Last year I was frozen with fear about him being in a public speaking contest at school. Just the fact that he had to get up in front of the whole school worried me. He got up there like he owned the place and won the darn contest!! My kid with vocal tics won a speaking contest! Amazing! He has shown me what a strong person he is! Funny since he is a tall, skinny kid. He doesn't look like the strong type but he has more strength than anyone I know. He doesn't let anything get in the way of what he wants to do. I have learned so much from him!!! This has been a rough journey but I am so glad I get to take it with him and watch him grow!!! Hang in there. Keep coming back here. Take it slow and try one thing at a time so you can see what works and what doesn't. Find a good doctor. Trust God. He certainly has a plan for each of us. I look forward to reading more about your wonderful daughter and your journey together! Merry Christmas! Hope I lok
  2. Naturopath/MD highly suggested we try GABA for my son's TS. Actually suggested it 6 months ago but I held off until now to try it. We just met with doc two weeks ago again. I figured summer was a good time to try. He had his first dose last night. 500 mg. Took it after dinner. At bedtime he said he was feeling funny. Called it being "woozy". I tried to say he was probably just tired from the long day but I knew it could be the GABA. He took another this evening and by bedtime he said the same thing. Granted it was 11pm so he was tired, too. Late summer nights will do that. After reading past posts concerning GABA, I am a bit leary. Naturopath is convinced we should give it a try. I would love it if it helps. Hard to tell right now. DS is in a good state. Tics are only 3-5% of his day at most. He is relaxed at home and with friends doing fun stuff all summer. Tics only crop up when he is sick, tired, anxious, excited, etc... Doc actually wants him to take 500mg twice a day. I am thinking that is too much. I am sticking with once a day at night. He is 11 and around 75lbs. What are the nasty withdrawal effects? What else should I be concerned about?
  3. So happy for you!!! :D Please share what you did to get to this point! My young man has been gluten, casein, potato, apple, pork and many other foods-free for the past 6 months. It is really hard to stick to this but hoping it will be worth it in the end..... Thanks for sharing your great news!!!
  4. Found a naturopath that we are considering seeing for my son. Looks like he uses alot of chelation with his patients. I want to know more about this treatment. How does it work? What is involved? What are the benefits and risks? Has it helped you or your loved one? Thanks for any info you can share!
  5. This is an interesting thread. I have recently contacted a counselor in our area who has TS himself. I was thinking of taking my 11 year old son to him in hopes of CBT. My sons tics are noticeable in times of silence (church) or times of stress. Most of the rest of the time they are very minimal. I was hoping CBT could help him. Now not so sure. My son is interested in meeting another person with TS. I think a professional male would be a good role model for him but I don't want to make him more stressed by going. He doesn't have concerns about his TS. He just rolls with the punches and keeps going....
  6. BTW, what is the difference between Kids Calm and Natural Calm. And should the Natural Calm had added Calcium?
  7. Thanks for sharing, Abbe! So glad to hear that your son is doing well! Always encouraging to hear from other parents when things are going well. You have motivated me to try fish oil. I have been reluctant so far because I have heard mixed opinions and was worried it could make things worse. But now that school is almost over here, I think we will try it. I have some really pure stuff from the naturopath we see. We currently use 5HTP at night and Natural Calm. Very few motor tics but vocal tics still present during quiet times and times of stress. Thanks again, Abbe! God bless you and your family!
  8. We used natural colors from real foods this Easter! Kids had a blast!
  9. I will be facing that problem too as ds is dairy-free among other things. We make our own popsicles using fruit juice. Kids like them and I like that I know what's in them! Doesn't help much when the neighbors all have junk from the ice cream truck though!!! Good luck!
  10. Patty, Here's a few of the things my son likes: hard boiled eggs "noah's bread rolls" and peanut butter Hot foods in Thermos: *taco meat and salsa (with salad and organic corn chips in another container). He loves making his own taco salad and the other kids are always jealous! *meatloaf and rice or noodles *stir fry and rice *rice pasta and sauce I came across a place with gluten free wraps the other day. You had to buy a bunch online at a time. If I can find the site I will post it for you. But since it is hard to find decent bread this would be great! Might be good for tacos, too! I will be watching this thread for more ideas. My son is 10, too, almost 11. It sure is hard. Seems like they always give the kids a pizza party as a prize! ugh. Ds' teacher is doing a taco one soon so Ds can be included. Yay for her! ((((hugs)))) hang in there! Your son is lucky to have such a good mom!
  11. I totally understand your situation! DS recently started gluten and casein free diet. We live in a cold climate and his thermos keeps food warm for the 5 hours he has to wait until lunch. I send him with leftovers all the time. He prefers them and I love that I can control what he is eating. I put very hot water in the thermos first and let it sit covered for about 5 mins to warm up the thermos. Then I dump the water and put in the hot food very quickly. Seems to work with a good Thermos. Hope this helps!
  12. Our son is almost 11 and weighs 75 lbs. I currently give him about 1/2 tsp of Natural Calm at night before bed. I have been thinking it might be more effective if given in the morning to help with school? I don't want him to be too tired though? When do you find it helps the most? How much do your kids take? DS doesn't like the flavor, even the lemon/raspberry one but we add a little lemonade and it helps. Any other suggestions for making it more palatable? Thanks so much!
  13. Cheri, Where do you buy daylight lamps?
  14. My son was in the school play on Friday. They had a morning show for the school and evening show for family and friends. He managed to control his tics for the most part in the morning. I noticed them but most others probably didn't. Totally different story in the evening. His head started shaking right from the start of the play. He had to physically hold his chin with his hands to try to keep his head from shaking so much. He said the kids around him were asking him if he was ok. As soon as the show was done he wanted to go right home. He had a nasty headache. The head shaking continued throughout the weekend, mostly in the evening when he was tired. Play practice was brutal the previous week. He was exhuasted and we traveled out of town on the weekend for a family birthday. He went back to school yesterday, Monday. He didn't seem at all concerned about what the other kids would say. But it breaks my heart that he had to deal with such violent tics on stage when he just wanted to be up there having fun with the rest of the kids! He missed one of his lines, too. I think it was because he had to concentrate so hard on his tics. We are having someone come in and talk to the class about tics/tourette's next week. My son is almost 11 and requested this. He wants everyone to know. I am hopeful that the kids will support and accept him once they are educated about tics. In fact, I just found out that one of his best friends has some transient tics. I never had a clue. I am hoping this leads to some conversation between the boys. So how does your child deal with peers who notice the tics and classify them as "different"? What does your child say in response to others when they notice their tics? My son just tells them it is something my body does and I can't control it. I wish I could but I can't. Any other ideas??? I wish I could make this all better for him! I know it seems harder for me right now than for him. He really seems to accept the tics and deals with them the best he can. Any suggestions/insight is appreciated! Thanks!
  15. We were able to have our daughter tested for MMR and Chicken Pox titers. She had enough immunity and didn't have to have the immunization for kindergarten. Doc wrote a note that was included in her health records for school. I would keep asking and perhaps even find another pediatrician who will support you on this. If you have to do the shots, then definitely get them to give them individually. My ped said they don't order them individually but I know there are peds who do. Good luck! God bless!
  16. (((HUGS))) I completely understand about wanting to make it all better for your child! Hang in there! I know that we will all be stronger for this in the end...
  17. Hooray! So happy for you both!!!
  18. 71mom, thanks for the encouragement! We are definitely trying to focus on the positives as much as possible around here!
  19. Dave Pittman is the young man who was on AI. He made it to Hollywood but didn't make it past the first round I think. They didn't give him anymore airtime. I read on another website that he forgot some of the lyrics so sadly he didn't advance. He is 27 so he could try again next year if he so desires! He has a huge fan base already! I wish him all the best!!!!
  20. Thanks Chemar (or is it Cheri?), I am definitely considering trying L-carnitine if the vocals start causing a problem in school or with his daily functioning. I plan on calling his teacher at the end of the school day to see who things went today. He has a field trip to a theater to see a live production about the underground railroad. Thankfully, I am going as a chaperone. Vocal tics always make an appearance at shows or anywhere that he has to be quiet. Ugh. I will try to sit on an end off to the side if possible....with a supportive friend nearby. I am sure the teacher will be supportive, too. Our naturopath is an accupuncturist. He said he doesn't like to do accupuncture on kids because of the needles. I was surprised by that. What age was your son when you started accupuncture???? Not sure if our son would be open to it or not. He tossed his cookies after giving blood the last time but there was a huge build up of anxiety preceeding that experience because the lab didn't understand about the ALCAT testing and he was refused blood draw, had to come home, call dr and then go back. Ugh. I guess right now I am trying to decide how long to hold out before trying the L-carnitine. At home the vocals are minimal. Just times when he is tired, ill, excited or has lots of energy and is transitioning from one activity to another. They last a minute or less ususally. Except in church and possibly school. I will check with teacher later like I said.... He has a role in the school play that is in 3 weeks! Holding my breath! I think he will do his role fine but I am worried about all the wait time. I think he is actually sitting on stage waiting in the background quite a bit. Will have to talk to this teacher, too. So far she says he is doing great! This is the kid who walked off with first place for his 5th grade public speaking contest so I am sure he will surprise us! God has given him many talents! It is me who worries and worries and worries.... Thanks for all the support! I don't know what I would do without this wonderful website and all the caring people here! God bless you all!~
  21. Hi Faith, I like the combo of Faith and Hope! These are two of the greatest virtues! With these I know we will overcome all of the challenges we face with our kids! My son has not gone for a well-check this year. I didn't want to go near the pediatrician's office with the swine flu scare and I haven't bothered setting up an appt yet. Overall, he seems to be in good health other than the tics, of course. I am bracing myself for the dr saying he needs boosters. I will do everything in my power to decline. I wonder if there are titers than can be done to see if he has enough immunity already built up. We did this with our youngest for her kindergarten boosters and she didn't need any of them thank goodness! My son goes to a Catholic school so they attend mass as a class once a week as well as going as a family on Sundays. He is also an altar server and is scheduled to serve additional masses from time to time. So far he does well serving masses because he is busy doing what he needs to do. But when he attends with his class is when his teacher has noticed the vocal tics. They usually don't cause too much of a concern during the regular school day so far....but when he has to be quiet for a long period of time it is just too much! Our faith is very important to us so church isn't any option for him. We just have to figure out what to do when the tics become too loud for the others around him. He knows he can leave his class or our family and go to the room in the front of the church if he has to. Right now he doesn't want to use that option although I wish he would. If he just got out for a bit, he could probably come back and be calmer for a while longer... We have been off from school for a week and it was nice to have him home without any stresses. The tics were so minimal. He had a friend over for most of the day on Thursday. They had a great time together and basically no noticeable tics. The friend doesn't know that he has TS. My son may have mentioned to him that sometimes he does things he can' t control but it is no big deal to the other boy. They have been friends for a long time. I sure hope that continues after the representative from our local TSA comes in to speak to the class soon. I am really hoping the kids develop an understanding of what our son is dealing with and are supportive more than negative. I think they will be. They are a good group for the most part! Every day is a challenge. I know the tics bother me more than my son at this point or at least they seem to. I have committed myself to continue on this journey to find answers for my son and for others. I know there is a reason we are dealing with this....just wish it weren't so frustrating and heartbreaking at times....
  22. Can someone please describe NAET therapy for me? I mentioned this to my naturopath and he made it sound like it was accupuncture. But from what I just read it sounds more like kinesiology/muscle testing? I would really like to learn more ..... Thanks!
  23. My son is almost 11 and in 5th grade. He has had tics since around age 8. They have gone unnoticed by most until recently. The main tics are vocal. He only has them less than 5% of the day. We had a week off from school this week and most of the time I didn't see or hear any tics. The main times I notice the tics are times of transition, like when he comes to the table for dinner or sits down to say family prayers. We attending church this morning and church seems to be a big trigger for him. It is hard to stay quiet for over an hour! The vocal tics started about 30 mins into the service. They are a series of vocalizations. "Ti, ha, da, hmmm, yheeesh" he repeats it over and over several times and then stops. He tries to do it quietly but it is so hard. Just breaks my heart because I know he wishes he didn't have to do it and during church it is so quiet and every looks to see who is making noise. He has a few motor tics. My husband took the kids sledding yesterday and he said he noticed the head shaking tic when they first started sledding. I am sure he was very stimulated and excited to be sledding! So what can we do to help ease these tics? I have read that L-carnitine can help. He is a slim guy at only 75 lbs. What dosage would be good? Is there anything else known to help with vocals? We started seeing a naturopath recently. ALCAT blood tests showed a wide variety of intolerances. Severe intolerance to fructose, white potatoes, gliadin in gluten, casein in milk....so he is currently GFCF and no fructose or potatoes and a host of other things. We haven't allowed HFCS in years or artificial anything. He has been amazing about the whole thing. Naturopath thinks we are on the right track and wants to see him in 6 months. The vocals are consistent and I would like to try something to help reduce them. Any advice is appreciated! Thanks and God bless!
  24. Your son will absolutely be included in my prayers! I ask God daily to watch over everyone with TS, especially the kids who are trying to learn how to deal with all that is involved with TS. Keep us updated on your son's progress with FF school. What a great thing for him to want to be involved with! You must be so proud!
  25. Chemar, it is nice to know that your son was met with favorable reactions from most other classmates after educating them on TS. Our son is 10 and in 5th grade. I met with his teachers about a month ago and talked with my son prior to the meeting. I asked him what he thought would help the most. He said that he wanted the other kids to know about TS. I thought this was brave and mature of him. Somedays I just want to hide at home and not face the outside world which can be so cruel sometimes. I know kids can be mean but I also think that with education they can also just learn to accept new situations. We have someone from our local TS chapter coming in soon to talk to all the 5th graders. I am praying for a positive response. It is a small, private school. The kids have been together with my son since kindergarten. He has some good friends. I really think it is the right thing to do in our situation. Andrea, good luck with your son and his classmates! This is such a challenge.
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