laster99

I would have to say my son has done the same sort of things, and yes, I feel like it is part of the whole TS picture for us. I think they are dealing with so much emotionally that it is hard for us to grasp at times. But my son would get mad at me when I would offer him help with his work. He would get mad about a lot of things that didn't make sense. We started seeing a homeopathy dr a few months ago and it has changed everything! His temperament is completely different and he is very easy to get along with now. Also, don't underestimate him. I have found (in my experience) that TS children are very intelligent... Maybe not by the school standards. Maybe he can only read at 3rd grade level, but he may be very advanced in another area and feels frustrated that he is being held back by his reading. My son has dysgraphia and would have had a terrible time in a school setting and would have probably been made to feel stupid, but it is not an issue at home as I can write for him of necessary, he could type it on computer or use the voice-to-text program. But he is advanced in other areas. Think about it... We all have our strengths and weaknesses. They are not as accepting of that in school. Just my 2 cents. :-)

My son has had TS for several years, and yes, there is a definite difference outside. I noticed this long ago. Whenever he goes outside, the ticcing is considerably less. I always wondered if it was that he relaxed more in nature..

Our oldest, now 11 has been displaying tics since age 2 and diagnosed with TS at 6. We have been getting some great help through homeopathy. Now my youngest son, age 6, has developed tics as well! Now that I look back on it, I think he has had them for a while. (Sniffing and throat clearing with no illness), but I didn't want to jump to conclusions. In the last couple of weeks, he has now developed eye rolling and head shaking. This is really hitting me harder than I could have expected since it is happening again :-(. I just wondered how many others have multiple children with tics and/or TS?

My son has Misophonia and it is directed at me. He has Tourette syndrome and ocd as well. Honestly, I think caretakers of Misophonia sufferers need a support group themselves as it can be very hurtful and hard on us emotionally. I am looking for answers and help for us just so that we can function half way normal as a family. Any suggestions or support from other families who suffer is appreciated!

Thanks for the reply, Cheri. I am just considering the possibility of the OCD with him because I have seen some obsessive tendencies. He went through a short phase where handwashing/cleaning was a problem. Then he seems to get stuck on certain thoughts. I don't know a lot about it, but with my oldest having the TS/OCD combo, I know HE has had a lot of "fears". My youngest deals with fears too.. and the day I realized his food thing was more like a fear than anything, a lightbulb went on. It's interesting to know that sensory issues go along with it too. I was trying to get a referral from her to an OT or Speech Therapist as I learned that was a route to take. She supposedly is specialized (in that office) on the neuro side, but who knows? She may have been irritated at me that I opted out of the neurofeedback for my oldest with TS. And she may have wanted to go that route with DS4, but I was asking for help and she literally ran out of the room telling me she'd schedule a Nutritionist and didn't come back. Not sure how a nutritionist could help.... they can plan a menu for him all they want, but he won't eat it. I think somehow she missed (or didn't want to accept) the real problem! So strange. I am definitely going to try and find SOMEONE who can give me a referral. -Melissa

Thank you so much for the info! I will definitely be checking out our options. It's a shame out current Dr. wasn't more help... or we could be on the road to getting better now.

I have returned from a visit with the dr. with him yesterday and I am completely frustrated. My 4yo son has had food allergies since 1 year old and been afraid to try new foods. What I have a hard time making people understand is that it's not just a picky eater thing. And it's not just because I have allowed him to eat what he wants. The kid won't even eat candy if offered to him. He tells me he is afraid of throwing up any time I ask him to eat something not on his "menu". He has cut his diet back to less and less... only eating crunchy textures at this point. Between his obsessive fears with food and (what I feel like is) sensory issues, eating is almost impossible these days. I have watched it get worse over the past few weeks. And yesterday the dr tells me that his allergy testing shows that 3 things he WILL eat, he is allergic to! I cannot take this child off of milk, wheat and orange juice as these are the 3 things keeping this kid alive right now! I feel like the dr. has made a judgement on me that I am just allowing him to eat like this and will not give me the referral I need for my insurance to pay for therapy for him! So a couple of questions here.... I deal with TS/OCD with my older so I am a bit familiar with OCD. I feel like OCD could be an issue with my 4YO...and that the eating thing could be part of it (obsessive fear). Do any of you think that is possible? And if so, what kind of dr./therapist would be best to help him? I have read about OT and Speech Therapy dealing with such issues. I do think there are sensory issues as well. And I have done just a little reading on Cognitive Behavior Therapy,but I don't really understand it. Any help would be appreciated!

Wow..thanks so much for all of the helpful info. My mind is blown right now trying to absorb it all and figure out what to do. But I am thankful to you guys that have experience to share so that it may speed up the process! I will do lots of reading on here tonight! But could someone tell me if all these are treated the same? Whether it is PANDAS or PITAND... are antibiotics the usual treatment? -Melissa

Kara...he had pneumonia when he was 2 years old!!! It's hard for me to remember, but it was probably before he started his first "fake cough" symptom because he turned 2 at beginning of Nov. and he got pneumonia the day before Thanksgiving! I always associated the PANDAS with strep. I obviously have a lot to learn! I will definitely read those articles you mentioned. We are in TN. But we frequently travel to Arkansas with my husband on business. How can I find out if there is a dr who is knowledgeable in either of those states? Thanks for your help! -Melissa

Oh my, Susan. This means more research for me! I am in the dark about the Cunningham test (though I just looked it up) as I haven't delved very far into the possibility of PANDAS. I finally just found a dr. who was willing to do the titer test.... only because I was adamant about it and she was quick to tell me how controvertial it was. I am really unsure about PANDAS and my son and I guess that's why I haven't pursued that route before. To make a long story short, he started with a "fake cough" at 2 years old, when I took him for a check-up at almost 5, the dr. asked me how long he'd had that tic. I was oblivious. He explained it to me, asked me to watch it, and over the next week he exploded with every classic tic. I was dumbfounded! I am wondering now..... what if he picked up strep at the dr. office? He's never officially had strep, but I have read enough to know that some people don't have the classic sore throat. Looks like I have more work ahead! Thanks for the info! -Melissa

My son just got a blood draw on Monday and his dr. office called me yesterday to tell me that the "titers came back negative". I am unsure at this point how accurate that is. I was under the impression that you have to check titers when symptoms peak so as to catch them high and I told the dr. that. She acted like if he has EVER had the strep virus in his system that his titers would show something. I read that titers would be elevated for a few weeks or months after an exposure. Has anyone ever had an experience of negative titers and then gotten a second test during a sudden worsening of tics and found them elevated? Or should I give up on this route? -Melissa

Statistically, I can't tell you. But I CAN tell you that my almost 9yo son has OCD and attention problems with his TS. I have read that it is quite common to have other things comorbid with TS. My son also feels the need to touch things (and count in his head) and has the fear problem. It got really bad a one point where he felt like something was actually getting him. He would be left alone for a few seconds and literally fall in the floor screaming for help! He would be COMPLETELY terrified. It was a scary and frustrating time for all of us! Thank goodness it has gotten better. He is just now getting to the point (with MUCH work) that he can take a shower in the room by himself, but only because he can see me in the next room from the mirror. :-) My son's titer's just came back negative yesterday, so unfortunately, it won't be as easy as antibiotics for him. I wish you guys luck and much success with your son's treatment! -Melissa

Thanks for letting me know, Ivan C. I told them yesterday that I would not be doing the neurofeedback as I am not feeling comfortable with what I have heard about it for TS patients. She was understanding and told me we can start out with the allergy testing to see what that comes up with and look into the chelation therapy also. His titers are also being tested but I am not sure how accurate that will be as I thought you had to test that when they were having a peak in tics...? Though he's never has any signs of strep, so if it comes back with antibodies, that will definitely be suspicious! -Melissa

Lynn2, thanks for the reply! I think this is what I really needed to hear. DH and I were struggling to figure out what to do. You're right... it scares me to think something could get worse. His tics are pretty minimal right now. We're pretty careful that his diet is clean and they also did some bloodwork to check for food allergies and his titers to see if he's ever had strep. Perhaps I should just find out if he has the food allergies and go that route. Seems like a lot of you here have some success with that. I actually had him tested a couple of years ago, but just recently found out that they didn't test for delayed reaction ones so I was pretty frustrated about that! Anyway, thanks for your opinion! -Melissa

Thanks for answering, Chemar. I am just wondering what negative experience people had. That it did nothing? Or that it actually had negative reactions? The few things I am finding on google list positive results for TS patients...so I am confused as to what to do. Hoping you guys can help me out! :-)

My son saw a nurse practitioner today (for the first time) at my integrative medicine dr. office for his TS and she is suggestion Neurofeedback as a treatment. I'm not finding a lot about it. I searched the forums and get the idea that some people feel negatively about it, but not really understanding why....unless it's for the cost. They are asking $3,000 for 20 sessions. I am not expecing a miracle cure, I guess, but everyone there told me all kinds of positive things about patients' outcomes. BUT they have not dealt with anyone with TS....only OCD and ADD/HD and such. I would like to think that it could help my son in some way, but don't want to be crazy and shell out a ton of money for nothing! Not sure what to do here and I would appreciate some advice. Thanks! -Melissa

Well, I was considering actually not teaching cursive. He will be in 3rd grade this summer, and he really has no desire to learn cursive, though he can read it. I have heard how it can be miserable to learn for TS, and I don't see how I can attempt the transition when the print is still so hard for him. He describes it as that he has to think about it too hard. He's a very intelligent kid and seems to excel in every other area, but just struggles with writing. Bonnie, I did try HWT a couple of years ago with him, but he hated it. (He hates the workbook thing, though.) I would be interested in the typing website, though! He likes to type (though not correctly), but i would love to speed him up. I was thinking of trying Getty-Dubay italics when we start back and actually doing it with him to give him encouragement. (My handwriting could use some polishing! ;-) ) Not sure if anything with help, but I keep changing tactics as he and I are both frustrated with this... And yes, it is an adventure. Sometimes I think I learn more than he does, but that can be the fun of it too. -Melissa

He does display some slight OCD tendencies, but I don't think that is the case with writing. He's not a perfectionist with it and will NOT take time to correct. He will avoid it alltogether sometimes (especially if it is an "assignment"...he hates to be criticized or corrected about it), and when he DOES write for fun, I have a hard time deciphering it. Practice is like torture for him and doesn't seem to help! :-( Well, I ran up on a couple of things last night. 1. Most TS patients have faulty visual motor integration (therefore have bad handwriting) and it can be helped with vision therapy. 2. Dysgraphia is common and may be helped with occupational therapy. Not sure if these things can/do overlap, but just trying to figure out what I need to do to help with his frustration in writing (IF there is anything I CAN do) and was wondering what experience others had with TS and writing difficulties. Now that I have found this out, it all fits together as I have always wondered why he had such difficulty with writing when he is so advanced in other areas. Any similar experiences out there? -Melissa

My son has had problems from the beginning with his handwriting and somehow I missed that this is supposedly connected with TS. I homeschool so it would be helpful for me to know if anyone has had any experience with improving handwriting. Obviously, practice doesn't help (it's more like torture!) But what about Occupational Therapy or something? Is there any advice or hope of improvement...or is he destined to be keyboarding it? -Melissa

Meg's Mom, I am definitely a freakish reader, as you put it. Amazon.com and bookstores are my favorite pasttime! Thank you for all the book suggestions. That should keep me busy for a while and hopefully help me understand the OCD side of it! Chemar, I had no idea there was actually a term for it! I had tried some supplements a while back (magnesium, multi, C,D, probiotic, DHA, B complex) and they seemed to help for a while and then it all seemed to gradually come back. He got so tired of taking all of that and begged me to stop and I finally gave in since it seemed to stop working. Thanks for the info on the CBT. I will try to check into some therapies to help him cope. Glad your son is doing so much better. I'm sure it's been a long road for all of you! I am checking out the possibility of the relation to candida. HAve any of you run up on that before. I found this article: Tourette's and Candida -Melissa

Hi Melissa - yep, that is OCD - is is VERY often comorbid with TS and a lot of times, people find that a decent amount of the TS is actually OCD. Once you are diagnosed with OCD, you would use a therapist for ERP therapy (Exposure & Ritual Prevention) - they can be hard to find on a pediatric basis, but you can go to www.obsessivecompulsivefoundation.org and check the list of doctors there that do ERP. Medication does help severe cases, but for kids the first line reco is therapy especially for milder cases. You may want to start getting ready by reading "What to do When Your Brain Gets Stuck" (avail on Amazon) with him - it is very helpful to understanding OCD, the tools that are used to fight, and how to retrain your brain. Also for your reading, I'd suggest What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner. I found it SO helpful to start to understand the full range of possibly symptoms/compulsions of OCD. It is not logical, so you just have to learn a ton. I also really like www.OCDChicago.org. Right...it seems to intermingle and sometimes I am not sure which is which because they are so similar! I seem to notice more things that lean toward the OCD side. And it makes a ton of sense that a therapy for OCD would help TS patients too. I just looked it up and there are 2 drs. within 50 miles of me that do ERP. I really don't want to do medication, so ...... that might be a good alternative to look into. And I have seen the "What to do when your brain gets stuck" book on Amazon and wondered if it would be helpful, so thanks for the recommendation. I am an avid reader and always looking for something else to absorb! I will check out all you suggested! Thanks for so much helpful info on that! -Melissa

CP, I understand that for sure. He often stands beside me, looking over my shoulder at something and does that loud screech in my ear. I KNOW he doesn't do it on purpose, but WHEW! It can send a ringing through my eardrum! I hope he can learn to control it as he gets older. I have encouraged him to try....not sure if that is the right thing to do or just asking waaaayyy too much. Thank you for your thoughts. I know God will help me through, but it's nice to have people that can relate to us. Meg's mom, I do think he displays some OCD things. I have considered the eye thing to be one, but he also has a few things that he has to do and count the number of times he does it. It's not an overwhelming factor in things, which I am glad of, but it is there. And I do worry about it getting worse. He has not been officially diagnosed with the OCD, but I feel it is there. Do most people have a Neurologist they are working with or what? I am curious. When he was diagnosed by a Neuropsychologist, we were mailed the papers and that was it. They diagnosed him and didn't offer any further help, really. Is this how it works? I will look up the ERP thing...it sounds interesting! -Melissa

I have done allergy testing on him...all came back negative... I used to have him on several things (Magnesium, probiotic, DHA, Vit D, B...I'm sure there are several things I am forgetting). When I firts started him on those, he seemed to get a lot better, and then over time, it seemed like it all came back as bad as it ever was. And he was SO SICK of taking all of it, I finally gave up. Right now I am considering the possibility that it could be Candida related. It seems like it may get worse with sugar/carbs. Not sure what I am going to do about it yet, though. Anyone else think a candida problemis related? I actually made a connection with some other problems he was having and read a couple of articles that it could be related! Thanks for the happy thoughts, Bonnie. I am feeling much better today. SOme days it just gets overwhelming and frustrating. I want to do something to help him, but I feel lost. I will definitely keep reading!.....and praying for patience. :-) -Melissa

I don't know anyone else personally who deals with TS so I come here to read and remember that I am not alone, although sometimes it feels like it. I know you guys must deal with this too, but sometimes it is so hard to be patient with your child's tics when they are driving you CrAzY! Well, that's how I feel today. SOme days I feel so patient and it's easier for me to ignore, but other days (I'm not sure if it is worse or just SEEMS worse because it builds up and we've been going through this for so long), I want to do something....ANYTHING to make it stop! Some days it's just SO HARD for me to understand that it can't be controlled. I just want to believe that he could control it if he really wanted to. I guess it's just so hard to comprehend if you don't have it......... His common ones right now are a squeal (sort of sounds like a bird and he does it at a volume that literally makes my ears hurt each time), a vocal "TKKK , TKKK, ", a slinging straight of the arm or leg (he does it so hard it looks like it hurts), and my absolute favorite......I don't know how he even does it, but he can move his torso in such a way that I can audibly hear a growling sound inside his belly. It just sounds disgusting! Oh...and I can't forget the constant eye blinking/rolling ritual he must do before he can even begin speaking. Most of the time, if you ask him something , it can take a while to get the answer because he has to do the "eye thing". Please don't think me a horribly impatient mom. Do you guys ever feel this way ?? And how do you deal with it on the days it really grates on your nerves?? -Melissa

I am recently thinking that my son's Tourette's is caused by a Candida infection. If you had your son had a candida problem and you took him off probiotics, that would let the yeast start multiplying again. Plus the ACV is antifungal so that could have actually made the symptoms peak because of the start of a "die off" reaction. Just a thought... I am noticing a corolation to my son's tics and sugar. Feeding the candida = more tics. I am going to try to wean him, but it's really a struggle just thinking about it. He's not a big candy eater, but sugar is in EVERYTHING. -Melissa