mommaonamission

Hello everyone! It's been a while since I've posted, but I think about the parents and children on this forum daily and how strong and dedicated they all are. My 13 yr old son was diagnosed with Tourettes last fall after yrs worth of sniffing that we passed off as allergies, that turned into full blown vocal/motor severe tics after a case of strep throat last October. After I panicked and cried and watched my sons joy deteriorate before my eyes...I did this: -RESEARCHED here and everywhere else -got him healthy by cutting caffine out entirely, cutting waaay back on sugar, detoxed his system with the help of drops purchased on nativeremedies.com, probiotics, and whole enzymes -educated him and his teachers (who were extremely supportive) -prayed...a lot Well, one year later, my son has 0 motor tics, and little to none vocal. This was a boy who even experienced coprolalia at the height of things. I don't think it was one thing that made a difference. I didn't put him in a bubble, and we talk openly about it. I also think the fact that it surfaced later than most (he was 12 at the time) it came on really hard, but is on it's way out due to his age. He is a straight A student and in honors jazz band after hardly being able to play in his Christmas concert last year due to vocal tics. I think most parents come here for specific instructions or an overnight remedy. I did. I think what helped me out is that I know my son well. I got to know him even better when I started to pay closer attention to what he ate. We played with his diet. I convinced him that his condition is no different than the kid that gets made fun of for really bad acne. It is not his fault. He is not alone. He ultimately made the difference himself. He is the strongest, bravest little boy I know. Every now and then, he gulps a little bit of air. I know this is when he is holding back a tic. I never told him to hold it in. He never took habit reversal or anything like that. He delt with it in his own terms with his most likely motivation being the tough world of middle school. We don't rule out that it might come back...maybe even worse. We just hope and pray and learn as we go. No meds. Good luck to everyone on here and God Bless.

Thanks Mommy11 for keeping us in your thoughts. I am so happy to have found such support. Hope all is well with you! Take care.

Hi Everyone! It's been a while since I've posted. Busy, busy, busy. Just wanted to let everyone know that my son has been on the Detox, Candidate, and Brightspark from Native Remedies for about a month now. The vocal tics took their course and are hardly noticable now, motor tics come and go. But overall we have come a long way since we began this road back in October. Currently, he is also on antibiotics to combat the strep anitbodies he tested highly positive for a while back. It almost seems like the antibiotics are causing the tics to resurface a little bit. I think they are just on their way out. They are very bearable compared to where we were. I have started taking the detox drops myself. They definitley do something. I'm tired, and am loosing cravings for sweets. My body seems a little chemically imbalanced, but I think it's because they are working. I will post again once I've done the whole cycle. I hope everyone, and your families are doing well! God bless!

Happy New Year everyone! Hope all of you and your families had a great Holiday. I know when you're watching what your kids eat left and right going from house to house makes it difficult. Just wanted to let you know that my 12 yr old son has been on the Native Remedy drops for 2 weeks now, and I'm seeing significant improvement. I have him on the Candidate (to help eliminate yeast), the Detox Drops, and the Mindsoothe Jr (to help with his overall mood.) I have also read that the Brightspark (used for ADD) helps with the tics. Tics are down about 90% and have been for a week. He was actually excited about going back to school a "new boy." He has noticed an improvement and is so much happier. I don't think they taste great, but he willingly takes them 3 times a day. I'm a little surprised at the progress since we got some negative test results back. I have to commend our Neuro because he listened to me in December when I told him the bad tics surfaced after strep. He ordered a blood test that day. Results came in a few days ago, and sure enough my son's antibodies are 3 times higher than normal. He ordered several more tests and we are going back today. The strep is still somewhere. I'm confident we are getting to the bottom of this, and I'm more sure than ever, that what you put into your body, as well as what is lingering, controls these things. You are all wonderful people and parents for acknowledging this and working at it, instead of masking it. I thank God everyday I found this forum. Happy New Year! Sarah

Hello all...I found a good article that supports the connection between infection and Tourette's. It helps support what I have been suspecting the past couple of months. My son is 12 and had an outburst of vocal tics after a strep infection that have increased in the last 2 months since he got sick. We have been working really hard supplementing and getting him healthy, but most of our improvement only lasted temporarilly. I had a hard time understanding how my son who even started showing signs of coprallalia had it so bad all of the sudden when we have no history of Tourettes in our family. Chemar, you were right if you read this about not getting better if there is still existing strep. We got his blood test results back yesterday, and he has 3 times the number of antibodies that he should. The strep has obviously settelled somewhere else and his body is continuing to try and fight it off. We go in for more tests on Monday and hopefully to get the right antibiotic. This is an interesting article...I wish more docs would observe this connection: http://www.sciencedaily.com/releases/1998/...80625083624.htm

Thanks Chemar! Eveyln, I agree. I think it is the drops that have been helping and so does my son. I originally ordered them to help rid the yeast. I also have him on the mind soothe jr. I think I'm going to order the other to see if it helps with the tics, even though they have already decreased significantly. My doctors office called again this morning to let me know they have ordered allot of tests for Kevin since his blood tested positive for high strep anitbodies. They have ordered some more blood test and an EKG and Echo. I had allot of questions and was a little concerened that they ordered all of these tests. It wasn't until his last blood test came back that the docs office even seemed concerened. Was this a standard procedure with anyone else from the docs office?

Hope everyone had a great Holiday! I just wanted to give a quick update...the last time I posted my son was not doing so well (severe vocal tics brought on by PANDAS 2 months ago.) I ordered Candidate drops, and detox drops from Native Remedies. I was conviced there is still lingering yeast in my sons body. He has been on them for about 1 week, and the last two days we have seen MAJOR improvement. He is also on the mildest dose of Clonodine, which I don't know is helping in the least. After a week on the Clonodine, I think things got worse actually...a new motor tic evolved briefly. Anyway, I think the drops are really helping. Kevin thinks so too. In fact, he told me today "mom, I those drops don't taste good, but I really think they are helping. You should post about it." It made me feel great that he is noticing the difference and it helps him to really keep on track with our supplements. One more thing...we got his blood test back today from his recent trip to the Neuro. I told the doctor that the tics surfaced after a case of strep and had been present since. Although he didn't want to admit a link with PANDAS, he ordered a blood test. Sure enough the test came back today, and he still has a very high number of strep antibodies in his system. We are going in again next week, and hopefully with the right antibiotics, we can kick this thing and get of the Clonodine. Thanks to all of you who have been concerned. God Bless and Merry Christmas!

I agree Chemar. I am going to consult with the therapist before he sees my son. I just want to feel it out and explore all of our options. We have explained to Kevin that it is a "coach." If I feel like the therapist will make him feel like he can control the situation, I won't continue the sessions. This particular therapist has worked with an adult that had battled with TS most of his life. He would violently throw his hand in the air to the point that it was hurting his joints. The therapist taught him to manipulate the tic into a hair smoothing jesture that was less obvious and less painful. I don't know that it will work, and I don't expect miracles. I'm just looking for an alternative to the Chlonodine. I am first going to investigate the correct antibiotic. I am just conviced that he still has omething lingering in his body. I have expressed to Kevin strongly how much I understand that he can't control it. That is why he feels sanctuary when he gets home. I told him it is a place where he can let it out after a long day at school. I still feel so guilty about all the times before when I suspected he could control the sniffing and throat clearing. I wish he would have told me that he couldn't help it back then. I don't think he really understood at that time either. I will let you know how things go. Thanks for the concern. Thanks mommy11. It is nice to hear that. It is also nice to have a place where people understand what we are going through. I know it could be worse. The Clonodine is doing something. The ticcing is more frequent, but less violent. He has seemed in very good spirits though. The most common side effect I have come across from reading about Clonodine is depression. I am watching for that very closely. I will keep you all posted.

Wow, thanks everyone. I have a few new things to look into after your responses. Carolyn, thanks for your support. I do believe he is excited about Christmas. Chemar...that makes sense. I absolutley blame PANDAS. That is when the vocal tic exploded. How does the doctor determine what antibiotics he should be on? Can an Integrative Doctor tell me this? We are currently looking for a DAN doctor, is this the same thing? Yes, the Neuro didn't want to hear anything about nutrition or supplementing, and when I told him about the tics appearing overnight after the strep, he ordered a blood test (which I am getting the results for today.) He must have suspected a link too even though he wouldn't admit it. You have been so helpful in the past, please let me know what you think and about finding the right antibiotic. Jeff...I'm so glad to hear your son is doing better. I will definitley look into Tenex. The Clonodine is for blood pressure too. I feel like I've been walking on eggshells since Thurs, waiting for the first side effect. I hate having him on this. I will research Tenex. Andy...what kind of doc ran the original tests on your daughter? Was it a DAN doc that ran the tests? I suspect my son of having somewhat of a toxic dump in him too. He has a horrible sweet tooth, and we can't even keep soda in the house. Please elaborate when you get a chance. It sounds like you really did a good job for your daughter. Obviously if you read this post, you know that things were going very well when I first started supplementing, then things took a turn for the worst a couple of weeks ago. Tics got worse toward the last days of school. Finals were coming up, and there were probably some sweets being passed around that he won't fess up to. He made perfect grades on 2 of his finals and A's on the others. He is extremely bright, but also puts stress upon himself to have the best scores in class. To my dismay, a few days before school was out, I recieved a phone call from his teacher with a concern. Kevin now is experiencing Copralalia. I have read this is very uncommon and it is so hard to look at my little boy saying these things. It is humiliating for him. This is why we agreed to try the med. I am not giving up. I am open to anything at this point. He is scheduled to see a Habit Reversal Therapist after the Holidays. I am searching for a good DAN doctor in the mean time. I am in Austin, Texas if anyone has any suggestions. I just keep thinking there has to be something we are missing. All of your feedback is greatly appreciated. I want to get him well and off the meds asap. I don't know how things can get much worse. Thanks, Sarah

Bleaschmann, Hello! You are not alone, and I hope that one day, TS becomes something that even ignorant and narrow minded people understand. Or at least are educated about. In the mean time, I'm sure your family and friends love you no matter what, and that is all that matters. My son had great results on Carnosine within about 4 days on it. This lasted only a couple of weeks, but he is at the height of it all due to his age. I expect the rollercoaster. I do think it would have continued to help if he were not at such a vulnerable age. Next week, he begins Habit Reversal Therapy. I have read that it is 90% effective, especially in adults with TS and OCD. I will let you know how it is working. In the mean time, hang in there. God Bless you and your family! Merry Christmas

Please read this and tell me if I might have done something wrong.... About 2 months ago, Pandas made vocal tics explode in my 12 yr old son. We started supplementing with: -multi vit (heavy in B complex) -grape seed extract -probiotics -indoor allery tablets Noticed my 12 yr old son detoxing, but tics still bad. Then we added: -L Carnosine After 2 weeks on it, we had 2 weeks of bliss! Majorly decreased tics, overall better behavior. 2 week on Carnosine, and overnight...bam they were back. I blamed it on a donut, but here it is 2 weeks later...and still bad vocal tics. Especially the last 2 weeks. It finally began to interfere with school. He began picking on kids and being aggitated and aggressive (complaints we have never had before.) So, we had our first Neuro appt Thurs. Doc did not want to talk about link between PANDAS, tics, or treating anything herbally. I expected this and took his attitude toward natural remedies with a grain of salt. Due to the recent school incidences, I did allow him to write a prescription for Chlonodine. So, here we are 3 days into the smallest dose of Chlondine. Not noticing anything yet good or bad. I just want it to help him through school while we continue to supplement and get his body healthy. I don't plan allowing any other meds if this does not work. Anti-pshycotics are out of the question. Are there any other mild meds you would resort to other than Chlonodine? I have ordered a few supplements from Native Remedies too. I want him off the meds as soon as possible. One last funny thing...even the doc stated there was "no scientific evidence" to support PANDAS, he ordered a blood test for my son to check for any strep remains. I told him everything happend over night. There is no denying something was triggered, and that it had to do with the strep. I am tired of adults giving my son the evil eye. People would look with his other little tics and figured he had a cold or something. But with the loud vocal, they just assume he is a rude little boy. I can understand kids staring, but I am saddened by the adults that look at my son in disgust. We are also beginning Habit Reversal therapy withing the next couple of weeks. I will let you know how it goes. Any feedback would be greatly appreciated. Thanks!

I have noticed that spicey and salty things make my son tic a little more. But these days it doesn't take much. The computer definitley sets him off! Tv is not so bad. Question...how long do your kidos tic after they get off of the computer? Does it seem like things are a little worse with the break? I think my son is excited or something.

Thanks Ronna. I appreciate it.

Thanks Chemar. I'm anxiously awaiting our Neuro appt Thurs. They finally rescheduled me. He is known for trying to go the natural route. I'm hoping he can point us in the right direction as far as the next step goes. I know the probiotics are helping, but I think there is still alot of yeast to be dealt with. Take care.

I'm getting ready to order some Candidate for yeast treatment from the Native remedies site. Has anyone tried this or had success? I thought the Carnosine was working, and it did for a little while, then one day, it turned around. Just trying to get through the Holidays...thanks!

Thanks Chemar. It kind of freaked me out last week after we got the tree, he was ticcing really bad, and it was the first time the thought even crossed my mind. But he had actually started ticcing bad the day before or so. Plus, he has never had any reaction to smells, and so far we have had a real tree every year. Could the PANDAS that triggered the tics now be causing him to react in a different way to smells? Oh, this is going to be a long season. How is your son by the way?

That is exactly what I thought they would do...not put me at the back of the line again. I am going to insist on getting in. I have heard good things about this particular Neuro, but even if he tried to push the meds, I don't plan on going that route. I think I'm going to check out the DAN doctor. Thanks for the advice! Does your son react to the tree by ticcing more, or is it just an allergic reaction? Thanks!

I made my son an appointment at the end of October to see a Neuro. That is when the PANDAS triggered the loudest vocal tic imaginable. I couldn't believe that was the soonest they could see us, but we took the appointment and have been supplementing in the mean time. So his appointment was for yesterday in Austin, and we got the big freeze. In this state when it gets that cold, everything shuts down. They cancelled school, and we were determined to make it to the long awaited Neuro appt no matter what. Then the docs office calls and cancels with me. She just said to call back this morning. So, I'm thinking that they will reschedule me right away since we have waited over a month. She told me we could not get in until mid January! My son is regressing for some reason right now and he can't wait that long. Carnosine was working like magic for a couple of weeks...less ticcing and no rage. Then literally overnight they came back really bad. I've been racking my brain. At first I thought it was the doughnut his grandma gave him, but that should have been out of his system by now. He is still ticcing pretty bad. It is becoming a little less frequent I noticed this morning, but the shouts are coming in three's, and really really loud. He is our new alarm clock. I can't wait that long to see the doc. I don't expect miracle answers, but it is our next step. Did any one else have this problem. Also... Just wanting to make sure that no one has ever experienced ticcing from allergies to Christmas trees?

Hi Fushia. Chemar is right, I have seen it at vitamine shoppe too. I really hope this works for you. As I mentioned in earlier posts, within a week of the L-Carnosine I saw very very positive results. Since then we have had a set back. I think he ate a couple of things he might have shouldn't. Plus we've got allot of excitement going on right now with the Holidays. Hopefully, whatever he injested makes it out of his system soon and we get back to the good. I am keeping him on the Carnosine because I know the good results were attributed to that. We will keep working at it. Good luck to you. I really hope you get the same benefits Firefly is seeing. As an adult having delt with it since child hood, you guys certianly deserve some relief. Be well!

Thank you Brett. I had a talk with his grandad tonight. I'm hoping he can relay it to her in a way that won't hurt her feelings. Yes, the set backs are so frustrating! This is our first one, even though I knew it would happen, it is still a little dissapointing. Our Neurologist appointment is Thursday. We are seeing one of the better ones in the city who is know for trying natural remedies before resorting to meds. This seems to be uncommon for docs now days. Maybe I can gain some more understading and share it on here. Take care.

Thanks so much Chemar. You have given good advice in the past. I will definitley check out the link. I have seen you post it before, but that is when things were getting better for us. I have had a meeting with all of his teachers at the same time, so we are all at a pretty good understanding. One day while my son was out of class, they had a talk with the rest of the kids and explained that Kevin has "nervous habits" that he can not control, kind of like hiccups. The kids have been very understanding so far. Before all of this, he was quite the leader, so I think they respect that a little. Luckily, in his middle school they have block schedule. He is pretty much with the same group of kids all day long. We were careful not to label it as Tourettes since some of the kids can misunderstand what that is. I know that he is still embaressed by it. Especially on the bad days. This is our first set back after things were getting better, so it's back to the drawing board. I expected that, so we will hang in there. It is just a little dissapointing. I'm sure you have been there. Hopefully the Christmas band concert tomorrow night will go okay. Tics have been pretty bad. Cross your fingers...thanks again.

Hello all. Well, it has been a hard week. The Carnosine had improved tics significantly, as well as overall behavior for at least 2 weeks. My husband and I both agreed, as well as his grandfather (who watches him after school sometimes.) I know it wasn't just wishfull thinking. After an excellent 2 weeks of less ticcing and good behavior, I got a phone call from his teacher last Thursday. They are keeping me informed on all of his behavior at school. She had spoken with the other teachers in his rotation, and they all agreed he had been a little moody the last couple days. I was shocked because he had been great at home. They did mention the tics had been better until that morning. I don't know if they were reading into the moodiness or not, no kids want to go back to school after Thanksgiving break. Anyway, when I picked him up that day, sure enough the tics had increased quite a bit. He had a hard afternoon and his headache was back before bed after having been gone a while. He admitted to me before bed, that his grandma who picked him up for school that day gave him a couple doughnuts! I was very upset about this. We all discussed what was on the "DO NOT Eat" list, and this was on the top. It has definitley set us back. He just called me from 7th period because they were having a silent assignment, quiet time to work I think. Anyway, he was scared. He just called to say that he was having a bad day. I know he wanted me to come rescue him or make it better or something. He was embarressed and I could tell he wanted to cry. For a 12 year old, this is social suicide. I felt so helpless once again. Does anyone have any experince with how to deal with this. When vocal tics are bad, and your child is in a quiet classroom, what do you do? I need to make this easier on him Our first Neuro appt is on Thurs. Maybe that will be helpful. Any suggestions in the mean time would be great, and very appreciated. Thanks.

Chemar, Thanks for the heads up, I have not done any research on Nystatin. I will also look into the others you mentioned. The Carnosine is still working, but this was a hard week. Grandma (not my mother, but his dad's) is a very loving grandma. The biggest problem stemming from this is that she can not tell my son no. She was the same way with his dad, and till this day, he has allot of growing up to do. Since the whole PANDAS and experimenting with his diet, one thing I have made clear to everyone is that caffine and sugar without question will make his tics worse. She agreed with me since he goes over there 3 or so days a week after school until I pick him up. He also frequently spends the weekend of his fathers visitation there. I really need them to be on the same page with me. One day last week, I picked him up and for the first time since the Carnosine, his tics were increased by 70%. I had him go over with me everything he ate that day. He managed to leave out one very important detail that he later admitted that night when he could no longer deny that his tics were back in a bad way. He told me that his grandma gave him a few donuts and said "it was a one time thing to see how he reacted." I am very upset. She expressed to me how concerned she was about this, and then this happened. Kind of like last Christmas when I asked her very nicely not to get him a cell phone...sure enough Christmas day, he calls me on his new cell phone. I don't know what to do. She caters to his every desire and I feel like I am being completely ignored. I know she is not doing it to spite me, but I don't get it! I am so frustrated. They have always helped me so much with my son, especially while I was a single mom. They made up for what his father lacked. I don't know what to do. I feel helpless, and like all the work I have done has been undone. Thanks for letting me vent.

Rebecca, I'm so sorry you have to deal with this. My son also has tics. We are seeing a neurologist on Thurs to have him diagnosed correctly. I'm learning new things here every day. It is a useful tool and as I learn more, I hope to post things in order to help others. Anyway, I know it is no help to you, but I wish you the best Christmas and I know things will get better for you. Have faith and take care. Sarah

Hi Brett and Spring... I think the allergist is a great idea. I plan on making an appointment for one soon after our visit with the Neurologist on Thursday. This will be our first appt with the Neuro. Brett, something again you might consider if you strike out with the Carnosine is Nystatin. I have come across it in many articles and it appears to be highly recommended and effective for yeast control. I plan on using next time he gets sick since I'm sure the tics will magnify. I think you need a prescription for it, and you might be able to get it from the Nutritionist. Spring, I believe my sons TS was brought on by a shot containing Mercury that I got when I was pregnant. I know there is a strong link between the two, and there is no history of TS in our family. It is only logical. I think that is why the Carnosine had been so effective for us. It removes toxic heavy metals from the body among other things. You might consider it for your son. It has been really good for mine. You are all in my thoughts and prayers...especially your little ones. Take care.