brett

Hi again momonamission, it's Brett. I want to tell you that my experience has been very similar to yours. I have written about it extensively somewhere on this site in a few places. My son is on a medication, and it is called Tenex. I would highly recommend that you look into that if you are going to try a medication. I have a very good neurologist and it was with much thought and research that I agreed to try a medication. My neuro does not use clonidine as he says he feels it is too sedating. Tenex is an anti-hypertension medication (obviously, usually given to people with high blood pressure). It works on the same part of the brain that causes tics. It is NOT an anti-psychotic or in any class of drugs like that. Believe me, I researched all the different medications, and this one by far has the least side effects of them all. No long term damage. Can be tapered off with no withdrawal. Initially when he first started taking the Tenex, he was very tired and out of it, headache and dry mouth, for about a week. He is only on a 1 mg pill that we split, so he gets 0.5 in the a.m. and 0.5 in the p.m. After one week the side effects were gone. His tics have DRAMATICALLY decreased. Now mind you, he still has some tics, no medication will take them away totally. But they are so much less and no longer interfering with his functioning. Right now your son's tics are interfering with his functioning. I know a lot of people recommend meds as a last resort. But I decided to go ahead with this small dose as my son's tics were out of control (physical and vocal) and out of nowhere overnight, and it was with much thought that I said yes. But it has made a huge difference. And now he is functioning so much better, his mood is so much better, so much less depressed and upset. Now while he is doing better I can look at all of the other things that seem to trigger tics and try to lessen them, as well as explore more natural options as well. My neuro thought PANDAS right away on our first visit, but anti-strep titers (I have had them done twice) are negative for step antibodies. Also, a 2 week course of amoxicillin did nothing, now we are trying Zithromax for a month just to make sure. But he still has tics. So now we are looking at a tic disorder. As time passes we will learn more and understand more about what triggers his tics. During that time, he needs to function and the Tenex is doing that for the time being. Please ask your dr. about Tenex, like I said, I think that is the best medication with the least side effects.

HI momonamission, it's Brett. Both my husband and I agree that tv and video games make our son worse. Particularly the wrestling, he loves to watch that, lots of flashing lights, loud, etc., etc., while he watches it his tics get worse and afterwards as well for hours. The same with video games, if we stand behind him and watch him he is ticcing like crazy, and again, it will last for hours afterwards. Weird, huh? Lack of sleep also seems to make him worse.

Thanks Chemar, I will definitely pick some of that up at Whole Foods. I don't know if he has a wheat allergy, he always eats whole wheat bread and whole wheat pasta, and I don't notice anything with those. These tics are a mystery to me, it is so hard to figure out what is what. But I am trying!

Hi, it's brett, I was just wondering if anyone knew about the effects of soy sauce on tics? I know that sounds like a weird question, but my son's tics definitely have been better (not gone, but better), and then all of a sudden last night, they were so much worse, and still this a.m., really bad. I am trying to figure out what he did yesterday, I had to work late so was not here, he was left with babysitter and then father, apparently he watched 2 and a half hours of tv and played computer games for at least 15 minutes! I know those are triggers for him and I have drastically limited those activities, so last night it was much more than I would have allowed. Then he ate a lot of soy sauce with dinner. If anyone can respond that would help so much. Thanks

Hi Momonamission, it is Brett. I totally understand how you feel. It is very difficult when someone who loves your child and truly wants their best interests at heart does something that they feel is okay, but undermines the plan you have worked so hard to establish. Perhaps you could talk to her, but you can couch your words in a manner like this: "Grandma, I know how much you love grandson, and how important he is to you. You are also so important to him and to me as well. I know how worried you are about him. We all are. It is such a hard time for all of us. We need to work together to help him. I need you to help me help get him better. Your help means so much to me. Let's talk together about what works for him and what doesn't. I know you want to give him everything he asks for, what grandparent doesn't? Let's talk about what works for him the best, and we will be on the same page." etc., etc., something like that? That way you are in it together. Maybe she can agree to give him a special little something once every month, but not spoil him. It is hard for grandma's. My mom is suffering terribly as she loves my son so much. Anyway, I am sorry about the setback. Life does have these setbacks, we cannot be there all of the time watching over them although we wish we could and worry constantly! Brett

Hi Momonamission, it is Brett. I totally understand how you feel. It is very difficult when someone who loves your child and truly wants their best interests at heart does something that they feel is okay, but undermines the plan you have worked so hard to establish. Perhaps you could talk to her, but you can couch your words in a manner like this: "Grandma, I know how much you love grandson, and how important he is to you. You are also so important to him and to me as well. I know how worried you are about him. We all are. It is such a hard time for all of us. We need to work together to help him. I need you to help me help get him better. Your help means so much to me. Let's talk together about what works for him and what doesn't. I know you want to give him everything he asks for, what grandparent doesn't? Let's talk about what works for him the best, and we will be on the same page." etc., etc., something like that? That way you are in it together. Maybe she can agree to give him a special little something once every month, but not spoil him. It is hard for grandma's. My mom is suffering terribly as she loves my son so much. Anyway, I am sorry about the setback. Life does have these setbacks, we cannot be there all of the time watching over them although we wish we could and worry constantly! Brett

Thank you Marie and Spring for your posts. I am taking all of your words of wisdom into consideration. It seems to be very important to take things slow. That is hard for me to do, but I am trying. We are trying to be encouraging and upbeat for our son. He knows he can talk to us anytime. It is draining watching all of this unfold. I found a good pediatric immunologist/allergist (on my insurance plan!) and got an appointment for Monday. I will have him tested for food allergies and blood tests for other things as well, whatever the dr. recommends. It is a start. I can then take those results to a homeopathic dr., I have found one in my area and will make an appt. after I get results from these tests. To everyone reading these posts, all of your advice really helps and definitely makes me feel less alone! Brett

Momonamission, thank you so much! I will bring this when I have the appt. with the homeopathic dr. I really appreciate you taking the time to post that for me. My son Jesse is in such emotional pain it just kills me. Today was a very tough day, he is so depressed and moody, feeling so unlucky and alone, cries at the smallest things. The no-screens is hard for him, he is used to watching a lot of tv and that definitely distracted him from his symptoms. But I have to say he is calmer without the tv. He realizes this as well. While I don't think the screens are causing his tics (as he continues to have all of them even 4 days without screens), it has helped us to reassess the role tv plays in this house. Things are much calmer and quieter and we will modify for sure once tv goes back on again. I started Zithromax today and am giving it a 5 day try to see if he improves at all. We will see. Sometimes I feel hopeful, then others I think, what if this never goes away and he has to live every day with his body twitching and jerking? What must it feel like to not be able to be still for 4 straight weeks? To feel different from everyone else? I know you know what this feels like. Anyway, thanks for your help. I will keep you posted. Brett

Hi Cheri, thanks for the vitamin website, it is very helpful and I bookmarked it. I found a homepathic practice right near my home, I will call them tomorrow. I used one of the links off of this website to find it. It took some work! They are not on my insurance plan, I wonder if they take insurance at all? I guess I will find out. Thank you again. Brett

Thank you momonamission! I will look later for the information you post. Brett

Hi Momonamission, thanks for your reply. I was wondering what good multivitamin you put your son on? Because I have stopped giving him that Flintstone's junk and was at the pharmacy today, they told me that the plain multivitamin without any additives should only be started when a child is at least 12 or 13, as the amounts of vitamins in the pill are too high (double what it is in flintstones). So I thought I could split it in half if that is the case. But if you know of what brand/kind and where to get it I would appreciate it. How did you know what types of natural things to put your son on? It just seems that there are so many I don't even know where to begin. What did you start with? I appreciate all of your help. Brett

Hi Momonanmission, it is Brett. I was just wondering if you have given your son the Carnosine yet? And if there has been any difference? I read about your situation and is sounds so much like mine. This Saturday will be a month of tics and he has not gotten any better. Still on the Tenex so he can function but heartbreaking to watch him and he is so moody and depressed, mood swings within seconds of each other, says his head feels like it is going to explode, refuses to get up and go to school in the a.m. I have to stand over him to get homework done. Wants to drop out of all sports. This is a straight A school lover (he is 9 in the 4th grade), great kid, leader, excellent at all sports, energetic, happy, eager kid. Replaced by this child and it makes me so sad. I am on my own as I am not following neuro's advice to give Orap. I am holding the Zithromax right now waiting to try near the end of the week so I can watch for any effects. He has been no-screens for 2 days, but basically he is the same. I will call a new dr. tomorrow that uses a more holistic approach and does lots of testing for allergies, etc. I just know there is some underlying cause of this as symptoms came on so fast! An explosion of tics. Although he always had little tics here and there as a younger child (mostly coughing, throat clearing). Now he cannot sit still his body jerks so much. So I have read a lot about the Carnosine thanks to Firefly's postings on it. I would like to hear if anyone had any negative reactions to it, or positive as well? Also, my son is 9 years old and weighs 60 pounds, what is the correct dosage? I really do feel on my own, a follow-up appt. on 12/13 with the neuro is scheduled but frankly he just says use these meds and let's see what happens. How does that help? Thank you so much. Brett

Hi to Allison (and to Jeff as well), thank you for your replies. Right now I am reading a lot of info from this site and just trying to gather info. It can be overwhelming! I did start no screens today and will do that for a week. I did get a prescription for Zithromax, but am holding off just a few days so we are closer to the end of the week/weekend so I can observe him while he is not at school. He is taking the Tenex still. He is stable right now but still losts of jerking/tics. I will do the yeast spit test in the a.m. I am trying to do one thing at a time. I did find a natural dr. near my home and will call to inquire about food allergy testing. They also do the mercury testing. I have the info for the Great Plains Lab in case spit test comes back positive for yeast. When I sais his diet was bad, I meant a lot of junky food/candy, not so many fruits and veggies. Again, my fault of course for not being more diligent! I will do a no sugar diet next week, no candy, chococlates, cereals, etc., to the best of my ability and see if that helps. I am waiting on any type of supplements as I do not want to add too much too fast and would like to see the natural dr. first. After 3 weeks of this I have come to learn that I have to live with this and go slow to see what works. Thank you so much for your help and support. Brett

Thank you firefly and momonamission. I will definitely find that thread on Carnosine and read it. At this point I am just trying to gather information and do things slowly. My son has not changed for the better or the worse, so I am happy for nothing worse. He still takes the Tenex each day. We started no screens this week to start. I am looking into a natural dr. and food allergy testing. I will do yeast spit test in the a.m. I am holding off on the new antibiotics (Zithromax) for a few days. I assume that I get Carnosine at the drug store? Thanks for all your help. Brett

HI, it sounds like you son is doing great! What good news. I hear people referring to Carnosine a lot. What is Carnosine? Brett