

Hope
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advice please! don"t know where to go from here!
Hope replied to mommynme's topic in Tourette Syndrome and Tics
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 -
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?
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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!!!
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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!
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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....
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BTW, what is the difference between Kids Calm and Natural Calm. And should the Natural Calm had added Calcium?
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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!
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Natural Food Dyes for Easter Eggs and more
Hope replied to Chemar's topic in Tourette Syndrome and Tics
We used natural colors from real foods this Easter! Kids had a blast! -
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!
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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!
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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!
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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!
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Cheri, Where do you buy daylight lamps?
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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!
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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!