Toms_Mom

Faith, I just wanted to add I have been on and off of Zoloft for 6 years. I took it initially to avoid post partum depression with my last child. I had Post partum with each child, and it lasted longer with each child. So when I got pregnant with my 4th I decided to try medication, because I was so worried about how bad it might get. It worked well for me and helped me feel "normal". When I went off of it I did not titrate down at all- my dr. said it was fine to just quit. And I had no withdrawal symptoms. The problem was after a few months I would get depressed again, I'd start the zoloft again - feel better- then quit again and this just became a cycle. My dr. told me I should just stay on it for 6 months to a yr. , but I would always start feeling better, then forget to take the pills and before you knew it I was off the zoloft again. I wonder now if this was sort of a withdrawal for me- that I would get depressed again over and over after quitting. The last time I was on zoloft I was laying in bed sleeping and I was awoken by this heavy tremor in my head- it really scared me and I don't know if it was caused by the zoloft or not, but I haven't taken it since. It's been about 2 years. After my son started with the tic disorder, I felt like I needed something really bad. I didn't want to go back on zoloft so my dr. prescribed lexapro. After reading about the side effects online I decided not to take it. I decided to try treating it naturally- just like we do here! I have been taking omega 3 fish oil, and Unstress by Megafoods- its a b complex, and a multi. I can really feel the difference when I forget to take my vitamins. I also try to exercise everyday and make sure I get outside in the sun at least 30 min. a day. I hope this continues to work. Maybe if you start a good routine of supplements when you come off you could avoid the letdown that always comes. ( if you don't already supplement) I wish you luck! Mary

This is interesting to me because I read somewhere that left-handedness is common in TS. My son did the same as yours - we weren't sure for a while which hand he would write with, but he did chose his right hand. (He does have good handwriting) But he plays tennis, bats, golfs and throws with his left hand. I am left handed, as is my sister and my father. I do some things with my right hand though, and I always thought that was strange. Like for example, I cannot cut with sissors with my left hand and when I play golf- not often - I do it right handed, but I throw and play tennis with my left. My son has the chronic stuffiness also mentioned on another post for pandas. He had a sudden onset of symptoms which still makes me wonder about pandas.

Well you could be right, it could be a coincidence, but... my son was not sick at all before the soda and he is not one to get sick easily. In fact I cannot remember the last time he vomited- it had to be at least 18 months- 2 years ago. I think of course in most children it would not cause this kind of reaction, but given that my ds has been on a strict diet for 1 1/2 years, his system may be more sensitive to HFCS etc. Mary

When we go out I know it's boring, but I usually just buy him a bottled water and he is used to it and doesn't complain. However, if you were willing to take something along I know Blue Sky and Hansens has all natural sodas that are actually quite good! They are sweetened with sugar. I've bought them a few times and ALL of my kids like them. Also, Simply Lemonaide has single serving bottles at our grocery store- those are my favorite! I am dreading Halloween as well. My son has already told me he is getting lots of candy and he is going to eat all of it! I offered that maybe he could eat a few pieces that night- which has always been my rule even with my older kids- and I would buy the rest of the candy from him and he could go shopping for a toy and he said "Oh so you can just eat all of the candy!" and I said "No I will donate it somewhere!-I think our dentist office buys back candy."

Last weekend my husband took my son out to watch older son's tennis match. I packed a lunch for him, but later in the afternoon some of the parents and kids went to a restaurant and my husband wanted to stop by for a few minutes and thought it would be ok for my son to have a sprite while he talked at the bar. Well of course when he mentioned it I was upset and said he is not allowed to have that. He said "I thought we were going to ease up on the diet" and I said " yes, but I don't want him to have high fructose corn syrup!" I didn't really want to get into an argument- I thought whats done is done. Well anyway when they got home I had supper ready, but ds would hardly eat-which is HIGHLY unusual - he is ALWAYS hungry. So he went to sleep in our bed with dh-he wasn't feeling well. Two hours later- I was upstairs on the computer as usual - and I heard dh downstairs just vomiting SO loudly in the toilet - I went running downstairs wondering "what in the world?" and come to find out ds had thrown up all over the bed, the pillows, the floor, the wall and dh had gotten sick trying to clean up after him! Of course I ended up cleaning the whole mess. I didn't have to say a word-he knew. He was like "could that really make him throw up?" And I told him "Well when you think about it - he hasn't had anything but clean organic food for over a year and then you throw all of those chemicals on his empty little stomach, what do you expect? (He hasn't had any sodas in over a year). What do you all think about this reaction? He was fine the next day and back to normal! Mary

double post

Taurine for some reason really aggravated my sons tics. It took a whole week for him to settle down after taking it. I tried another one too, can't remember the name right now, that aggravated his tics as well. Mary

Lynsey, You are so right about our husbands. I often think how would I handle this without him? I really do depend on him to keep me rational and to reassure me everything is going to be alright. I just NEED to hear it every so often. I also think you are a Godsend to this forum -no matter how long you stay. You are giving some great advice I think a lot of us needed to hear! Mary

Lynsey, I can't thank you enough for your kind words and encouragement. I'm hoping I can learn from your experience and stop worrying so much! I have thought about homeschooling too, but thought to myself "why am I trying to hold him back when he is happy and content at school?" He needs to have a life. Not that i'm against homeschooling- i did homeschool my older 3 for a while when they were younger and it was great, but to homeschool my youngest at home alone didn't seem right. He wouldn't have siblings at home to have fun with ( they are 17,15 and 13) and he has wonderful friends at a small Christian school. His teachers have been great and I dont think they have noticed much. Like you said when you walk into that 1st and 2nd grade classroom there are so many kids doing wierd things, acting hyper and silly that I don't think my son stands out at all. What you said about some parents just ignoring the tics is something I've seen as well. I wish I could be that oblivious! To tell you the truth that's pretty much the attitude my husband takes and I really envy his ability to do that. The tics don't bother him one bit and he just goes on with life and says " they come, they go and one day he'll outgrow this" If hes out with my son somewhere and I call him and say "hows he doing? " ( and i know this is crazy for me to do!) he says "perfectly fine" and I'll say "you know what I mean- has he been doing that neck thing a lot?" and he'll say "I don't know - I'm not watching him - I'm watching the game!" Actually, my husband has been after me lately to loosen up on the diet. We've sort of agreed to do exactly what you did. Avoid artificial ingred. and colors , and preservative and continue to feed him a healthy organic diet. But when we're out or visiting people to allow him to eat like the rest of the family. We're also considering clonodine. Your posting has been a tremendous amount of help for me and I really appreciate it! Mary

Lynsey, I have a couple of questions if you don't mind. My son's onset of tics started at 6 1/2 -about a year and a half ago. Like you mentioned, I used to watch him constantly to see how he was doing, looking for improvement, to see if certain supplements were working etc. The past few months however, I have been avoiding looking at him. I don't know exactly when or why I started doing this, but I feel so guilty about it. I get such anxiety watching him tic I just try to avoid looking at him- which means I am not spending time doing things with him that I used to. The head tics are the ones that bother/worry me the most. When a new one starts up I feel my stomach just clench and I break out in a sweat. I am trying to get to a point where I can feel like "this isn't the end of the world and he is going to be fine- he will most likely get better in the teen years" but I haven't gotten there yet. At what point did you stop worrying so much and realize your boys were going to be ok? Also, at what age did you start the clonidine? The amino acids all seem to make my sons tics spike so we are limited as far as supplements go. I would like to try the fish oil, but after hearing about so many kids here not doing well on it, I am hesitant. I have thought of trying the flax oil though. Thanks so much for listening. Mary

Tami, I saw the commercial today! I'm wondering if it might help. I looked in my sons nose - didn't see any inflamation. He did ask for the Simply Saline today though -said he was feeling a little stuffy. We have a hepa filter in his room and use the pillow encasing too. Mary

Pat, He hasn't had croup in quite a while, but what I usually did was take him in the bathroom, run the shower with hot water and have him sit in there for 10-15 minutes and inhale the mist. If that didn't totally relieve it I would take him outside if the air was cool and that would usually do it. Lots of fluids and homeopathic cough medicine sometimes. Before the tics started I did use albuteral a few times, but I don't think he absolutely needed it- the shower seemed to work just as well, so I have avoided using it since. Mary

Thanks for the info Tami! The funny thing is my son rarely gets stuffy anymore. I don't know if it is due to the diet -especially eliminating dairy which I hear can cause congestion in lots of kids. I'm not sure if he is outgrowing the croup, coughing and stuffy nose symptoms or if the diet has helped him with his allergy symptoms. This time of year is when he would usually get sick. But... as I mentioned a while back his tics started creeping back in about 5 weeks ago. Lately he has added a few more tics although they are mild and I am trying not to worry. His diet hasn't changed, so that's why I wonder if it could be seasonal allergies. But my question would be "could he be ticcing from seasonal allergies while not having any other obvious symptoms like the coughing, stuffiness, etc.? Anyway, the Little Noses product does look very promising, so please let me know how it works. I wonder if it is something I should try even though he isn't stuffy? Mary

Thanks so much for posting lynsey! We need to hear more stories like yours. I try to tell myself not to stress, but it is sooo hard not to worry!

Bonnie, I can totally relate to this guy thing and I have those same thoughts about how much easier it will be when my youngest is older, which I hate because I was enjoying every minute of him growing up until this all began. He is my "baby" and I wanted him to stay little forever, but now I just want him to outgrow this whole tic disorder thing. As far as boys/men being more needy I totally agree. My oldest is 17 and is always asking for me to make him a meal or snack or wanting to know WHEN am I going to go to the grocery store , wants help with school, needs this , needs that, always thinks he needs to go to the dr. when he has a sore throat swearing its strep and its usually not. My girls who are 13 and 15 are very independent. They just do their own thing. Make their own meals, snacks, make homemade cookies and brownies and are a big help with the cleaning around the house. My 13 year old even likes to make dinner for me once a week. Last weekend my boys and husband were away at a tennis tournament and we had a great girls weekend. It was so relaxing without all my "needy" males including husband. If you can get a chance maybe you could take some time for yourself? Mary

Kim, Thanks for all your research on the Prevnar vaccine- although I am now totally sick My son will never receive another vaccine-ever. When we went to our neurologist app. last week my husband asked him if Thomas' vaccinations could have anything to do with his tic disorder and he admitted that yes it could be part of the reason. When discussing meds (which we are not doing) he said that as a dr. he is obligated to "first do no harm" Well what was our ped thinking when urging me to get this prevnar vaccine?! I think I also heard they were recommending this more for children in daycare and my kids have always been home with me - and Thomas was home until age 5! If only I could do it all over again...

Bonnie, We are so tired of the diet! It's really impossible to keep all junk out of the house with 3 teenagers. Even if I don't buy it, they will buy it themselves and bring it home. They make an effort to help me, but my son is now really bad about sneaking whatever he can get his hands on. The first year he would refuse anything he knew he wasn't supposed to have, but not anymore! I get sooo frustrated, but I really can't blame him. In school the other kids order lunches which is either chick filet, moes, pizza hut or quiznos and he has to smell their food everyday. We are definately a lot healthier eating family and I wouldn't go back to pop tarts and doritos but... I really would like to ease up and not have him feel left out when we are eating outside the home- school, parties, sports etc. I am wondering now if his tics are more related to the allergy seasons because fall and spring seem to be the times he tics more and we had a tic free winter last year. Kelly, Thanks so much for your opinions! I know what you mean about not showing classsic strep symptoms because when my older children were younger they NEVER complained of a sore throat! The only way I knew they might have strep was because they would usually get a temp. and feel/act sick and sometimes vomit. I will take your advice and wait for now, but if he has an increase in symptoms I will have him checked. I just wish we would have done this when this all began! He does complain of a sore throat occasionally, but never gets really sick from it. Also, when he was an infant he had the Prevnar vaccine which is supposed to prevent ear infections and strep. Could this be connected in any way? I really regret getting that vaccine now, because it was optional and my dr. recommended it and I had no idea back then of the dangers of multiple vaccines. Thanks, Mary

This is all very interesting to me because we have always gone the diet route and I never considered PANDAS and have not read many of the PANDAS threads. However, looking back I'm wondering if we should have tested for this and why the neurologist did not screen him. When my son first started having symptoms he was 6 1/2 and became obsessive about bad weather and me picking him up on time at school and tennis. Then a month or two later he started having an explosion of tics- head shaking, grimacing, and hand wringing. Now that school year we had strep going through our family 2 or 3 times with my older 3 children. I kept wondering about getting Thomas a strep test, but he never complained of a sore throat or had fever etc. So... we went the feingold diet and IgG testing etc. and he has been doing fairly well with some waxing and waning. After we made the diet changes have not seen any OCD except sometimes gets a little obsessed when he wants us to buy him something- or is that just being spoiled?! Anyway, he recently turned 8 and we decided to check in with his neurologist this week- we went Monday. I mentioned PANDAS- if that was something we should rule out and he said "And what do we do if he has it?" and I said "treat with antibiotics?" and he said "that is controversial - whether it works and everyone has a certain amount of strep in their system-However, if you would like to do it we have all the testing here and we can do it." Could any of you PANDAS moms advice me here? Should I get the strep test? Is there a certain test I need to ask for? Is it too late? Also, besides the sudden problems at 6 1/2 he did have some mild tics when he was 4 or 5 but they were so mild we did not recognize them at the time. Does that maybe suggest its not PANDAS since he did have some very mild habits when younger? Thanks for any input, Mary

CP, We use Simply Saline when my son is congested - it works really well and is like doing a nasal wash - it is just purified water and salt in the form of a nasal spray. We get it at the drug store.

hey Patty, My 15 yr old daughter (who doesn't have tics) has had a cough since last July! It doesn't sound productive - just an irritating little cough- maybe would sound like what you would think would be a tic cough? Her dr. kept saying it was viral- but for 2 months?! I finally decided to take her to an allergist and he did skin testing and she was allergic to some trees and cockroaches. They did an x- ray and she had a sinus infection. After being on the antibiotic for 3 days her cough is finally gone! So... maybe your son has a sinus infection? I wouldn't think an antibiotic would cause any tics - maybe just the opposite. Is he congested at all? My daughter was also very congested- she was constantly sniffing or like snorting - it was driving me crazy. I guess the main thing would be if your son has any congestion or headaches it could be a sinus infection. She is also on a nose spray now as well- I think it started out as rhinitis and later turned into a sinus infection. Don't know if this helps at all! Mary

Both of my sons' favorite vegetable is lima beans! (or butter beans here in the south) The way I cook them is first just prepare them as you would on the package(boil for 16-20 min. or so). Then while that is boiling cook 3-4 slices of bacon (nitrite free here) Use the bacon grease to saute some green onions (or any onion) and some minced garlic. Mix this into your cooked lima beans and add a little salt and pepper and there you have it. Sometimes I add a little butter as well or just butter if I don't have bacon. My son would eat these every night if I let him.

Thanks so much for checking back in with us! Please continue to check in once in a while (even over the years would be great) to let us know if the topamax is still working well. It's so good to hear! I'm so glad you have your life back! We know a boy who was on orap for 7-8 years and did great on it and no longer needs it- (although I know that is a drug most of us want to avoid and consider medication as a last resort) it's great that it worked for him and I'm glad to hear of the topamax as a possible medication if we ever decide to go that route. BTW what is sprinkle cap form? Thanks, Mary

Just an idea, but are you sure it is a tic? My daughter, 15, has had a cough going on almost 3 weeks and really has no other symptoms. Took her to the dr. and she said she's fine and its just postnasal drip- so she's on claritin right now which doesn't seem to help much, but it seems like it is sloowly getting better. Maybe your daughter might be having drainage as well. I had no idea mine was because other than the cough she seems fine. Have you had the dr look at her? My daughter seems to get this cough a few times a year out of the blue, but the dr. for some reason does not think its allergies. But I know what you mean- just listening to that cough all day can get pretty irritating(even when you know its not a tic) So hang in there and good luck!

Last summer I know we did better- spring was when it all started. This spring I saw a small facial grimace pop up after a few months of no ticcing. and I think I just made matters worse by starting the bonnies with taurine and then a couple of weeks later the mag taurine alone. Thats when all the head tics started and then I decided to give mindlinx everyday per drs. suggestion and he started ticcing again. I am guessing it was the glutamine? He finally seems like he is calming down but it seems to take a while for the effect of these amino acids to exit his system. So it is hard for me to say for sure, but I sure hope things are going to be better the rest of the summer!

My son had the nitrous oxide as a matter of fact this Tues. - he had to have 5 small cavities filled- he is seven and has had problems with his teeth- cavities and 2 baby root canals. Ugh! Anyways he had no problem with the nitrous oxide- no increase in tics- it was an hour long appointment and I was glad he had it to help him relax to get them all filled in one appointment. He has a pediatric dentist and I think that makes all the difference in the world - the dental assistants are also wonderful in helping him to feel comfortable. He also had the nitrous oxide about a year ago to have 2 cavities filled and I talked to the Ped. dentist about how my son had just started having tics like a week before (I was a nervous wreck) and he assured me the nitrous oxide would not make his tics worse and it did not that time either. Hope that helps and I think your child should do fine. Mary