Tattoomom

Well, he may have a touch of ADHD, it does run in the family, but it's definitely NOT Asperger's or Autism! I know that for a fact! Never ever has he shown any symptoms of either disorder.

My 8 year old ds has tics and major anxiety. He goes through phases where he gets fixated on certain topics and talks about them 24/7. For instance, he was obsessed with Spiderman for years, then it moved to Narnia, now it's back to Spiderman. He walks around "shooting webs" and talking about Spiderman and his villains. We listen the first few times and then politely ask him to change the subject. He does at that moment but he always comes back to it. Now it's Santa, a million questions about Santa! It's like he can't stop thinking about it! He has the gift of gab from me and his father and he's a very outspoken guy, so it's hard to tell if this is just his personality or a problem?!

Back in March 2007 (3 months after tics started) he had strep titers done after a negative throat culture- ASO- 7 DNASE-B- <60 He's had a couple negative throat cultures since but we never repeated the blood work.

He went from Feb 15.- August 22. with no tics at all. I noticed some mild blinking in August, a new eye roll tic popped up in September and only lasted a couple weeks. Then in October he had confirmed flu/ear infection with no tics. Took Amoxicillin and shortly after blew up with new tics. Tics we've never seen before. Granted, he had the eye roll tic in Sept. that I'd never seen before either. So, who knows... He's just never had this many new tics come up at once.

My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this. Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion! He took a course of Abx. for an ear infection during his bout with H1N1 back in October and since then, he's relapsed. I'm worried and not sure what to think. My husband claims he doesn't see half of it! We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though. He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Took him to the Ped. last week when his younger sister had a fever & sore throat and they both tested negative on rapid strep test. I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway." I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way? Should I pursue anything? If so, what? Where do I begin?! Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical? We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed. Anyway, getting back to my original reason for posting... Would you do anything in our situation? Does this sound like TS more than PANDAS?

We did. It was negative.

Faith, I believe Sheila Rogers book mentions it but maybe it was about PANDAS. I'll have to go back and look it up.

Thanks Luke'smom! As far as food goes, we took away gluten & casein and it really seemed to help. I'm thinking we need to go back to that diet but he is going to protest.

My husband and I usually agree on everything, well, almost everything but we are not seeing eye to eye on this. Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then replaced the throat-clearing with rapid, heavy eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. This is the tic that always comes back. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back. He developed a new eye roll tic in September, had swine flu in October and ever since, he's been ticcing bad. He started throat clearing, blinking, finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly, and I see him stretch his mouth a little bit. It's like he had an explosion! I'm worried and not sure what to think. My husband claims he doesn't see half of it! We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders though. He had strep titers done back in 2007 when he had his first explosion of tics and was negative. Not sure if I should explore PANDAS as a possibility again? I think we should find out why he has this burst in tics, but dh doesn't think we should. He thinks ds is fine and says, "So what if he has tics. They're not hurting him or hindering him in anyway." I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Am I crazy for thinking this way? Should I pursue anything? If so, what? Where do I begin?! Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? I lean towards PITANDS since he seems to get hammered with tics after an illness. Or is that typical? We just started him in therapy last week for his anxiety/fits he has. The Psychiatrist put him on a low dose of Zoloft. He noticed the tics (he has tics as well) and it bothered me a little because he kept talking to ds about his tics, and I'm sure that only made it worse. He sees the therapist again in a couple weeks, should I request he not speak to ds about the tics? It was kind of strange because he kept telling us, come 17-18 years old, they will be gone, yet he himself was clearly ticcing in front of us. I felt a little bad because I asked him about his tics and he looked rather shocked that I noticed. Anyway, getting back to my original reason for posting... Would you do anything in our situation? Does this sound like TS?

I've never tried, hmmm....

Oh wow! Thank you!! Gainesville isn't far at all!!

Yes, we checked his titers back in 2007. We never checked them again since they were so low.

Their rapid strep tests were Negative today. My kids have had sore throats with fever several times and never had a positive strep swab. They are sending it for cultures anyway.

We are in Jacksonville, Fl

You mean it made them worse? What can you do about it?

Thanks for the replies! We saw the Ped. today and she said he does not meet the criteria for PANDAS because he's never had a documented strep case. His titers were extremely low when we checked them back in 2007. ASO was 7 DNASE-B <60 I asked her why he is so much worse since Swine flu but she really had no explanation except for it being stressful on the body. Since she saw no need to further evaluate PANDAS, is there any harm to just let it go? Or does it serve him best to completely rule it out? As his mom, I hate to not investigate why he's having tics/anxiety/tantrums!

The reason I ask is back in 2007 when this all started (tics) he was tested for PANDAS. -Anti-Streptolysin & DNASE B Antibody blood work was NEGATIVE- But he has continued to tic, off and on and it flares up really bad when he's sick or getting over an illness. Here's my post on the TS board... they told me to post here. I was here on this forum back in 2007. My original post is here- http://www.latitudes.org/forums/index.php?...amp;#entry15688 Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again. In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic. I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones. I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) might have had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Or at least he thinks so! Obviously it was transient and went away because I've never seen him tic, ever! I'm so confused! ~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal. ~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene? ~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it? ~Should be look further into PANDAS? I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible. Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning. I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him. The weird thing is... his younger sister is going to the doctor later today for fever & sore throat so I'm taking him with me to get swabbed, too.

Thanks guys. Back in 2007 when this all started, he was tested for PANDAS. -Anti-Streptolysin & DNASE B Antibody blood work was NEGATIVE- The weird thing is... his younger sister is going to the doctor later today for fever & sore throat so I'm taking him with me to get swabbed, too. Should I be relieved that his father outgrew his tics during childhood or does that have no baring on Ethan's future?

I've read somewhere that TS might be Autoimmune? Anyone have any info or links on that? Also, when someone has tics (both motor & vocal) and they go away with diet modification/food elimination, is that still considered TS? Or are they allergic to the food and the tics are a symptom of the allergy? Like a brain allergy? Or are all tics somewhat still connected to TS no matter what?

I was here on this forum back in 2007. My original post is here- http://www.latitudes.org/forums/index.php?...amp;#entry15688 Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again. In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic. I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones. I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Obviously they were transient and went away because I've never seen him tic, ever! I'm so confused! ~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal. ~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene? ~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it? I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible. Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning. I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him.

I want to second this advice. We did a titer check and our son was immune to the MMR viruses so we declined the second shot. We homeschool, so the shot thing is not an issue for us but I do know of people who were given a hard time as the public school system here does not accept a titer check as a replacement for the shot.

I get it from local health food stores in my area. We don't have any of the chains (Wild Oats, Whole Foods, Etc...) but I'm sure you can get it at any of your local or chain health food stores. It comes in a block sealed in plastic just like regular block cheese does. The good thing about the brand is it actually melts!

Carolyn, We haven't tried it on cheeseburgers but I don't see why the cheddar wouldn't be good! Tricia

I use "FOLLOW YOUR HEART" brand. It's a vegan cheese alternative. Gluten free, casein free. It comes in many different cheese varieties. (mozzarella, cheddar, Monterey jack, etc...) It's a block and I just use my cheese grader to put it on pizza, tacos etc... It's sold in the refrigerator section of my health food store. Tricia

Hi Kylie, I understand where your coming from. Our ds has had bouts with tics but TS doesn't run in our family. We have noticed a complete connection between his tics and food allergies. He's on a gf/cf diet now. He was checked for PANDAS when his tics started. Basically, the doctor runs a strep antibody titer check to see if the child has had strep throat recently. Those with PANDAS will have a very high number of antibodies. (My child had none! He's never even had strep throat!) But the kids who have are treated with antibiotics to see if the tics subside. Someone dealing with PANDAS will be able to give you a lot more info! I'm not familiar with Neurofeedback? Tricia