san70

My 16 year old ds has had tics for many years. Most tics include bending his neck sometimes just a quick bend forward but other times he uses his hand to really push his neck down and when standing he sometimes has to bend over. He also stretches his feet. I believe he has some ADHD, too. He had started driving and has been ticcing. My concern is the safety part. While the tic is brief, he is taking his eyes off the road. Any advice from those out there who have gone through this would be greatly appreciated. I know I can't stop the tics but what can I do? San

A little background...Oldest ds, now 15, has always had tics since he was little. Still has them but not as severe as he used to; tics when stressed, reading, watching tv, and driving in the car. Youngest ds, 8, had a sniffing tic since he was a toddler. Within the last couple of months, though, he has developed more complex tics. He stretches his neck back almost like a swan. This has been for several weeks. Prior to this one, he would hold his hand in front of one eye then the other. He now does both. In school, he has been a little more distracted. Not sure if this is because we are so close to summer. This ds had his tonsils and adenoids removed a year ago due to reoccurring infections. Some infections were strep but most were not. I tried to eliminate dairy, though not completely and saw absolutely no change. We eat a clean diet as I am familiar with this because of my oldest. I thought about possibly Lyme disease as he is in the woods and we have found deer tics but I have not seen any indication that he is infected. In looking at the PANS info, he doesn't seem to fit the profile, if there is one. There has not been a sudden change in behavior. I'm stumped. I don't know what to do. I'm so stressed and upset. I fear that I am headed down the same path as the oldest. I don't know what to or how to help him. Any advice or insight would be appreciated. San Like This Quote MultiQuote Edit

I have been thinking about what you said and the more I thought, I realize that my youngest ds did show tics earlier. He had this sniffing of everything tic. I'm not quite sure why I never really put it together since my oldest ds showed tics at a very young age, too. I will still post on PANS but why is it that the tics seem to have exploded around 8 for both? I have read that to be the case but what is the connection with that time in development? Also, another question, my oldest ds is 15 and will start driver's ed in the next year or so. I am concerned about driving and ticcing...my ds tics when I am driving and he is beside me. His tics are mostly stretching his arms and bending over. Both of which can not happen while driving! Any thoughts for those of you who have been through driver's ed? Thanks. Sans

It's been awhile since I have posted. Oldest ds, now 15, has always had tics since he was little. Still has them but not as severe as he used to; tics when stressed, reading, watching tv. Youngest ds, 8, never showed signs of tics until the last couple of months. He stretches his neck back almost like a swan. This has been for over a week. Prior to this one, he would hold his hand in front of one eye then the other. In school, he has been a little more distracted. Not sure if this is because we are so close to summer. This ds had his tonsils and adenoids removed a year ago due to reoccurring infections. Some infections were strep but most were not. I tried to eliminate dairy, though not completely and saw absolutely no change. We eat a clean diet as I am familiar with this because of my oldest. I thought about possibly Lyme disease as he is in the woods and we have found deer tics but I have not seen any indication that he is infected. In looking at the PANS info, he doesn't seem to fit the profile, if there is one. There has not been a sudden change in behavior. I'm stumped. I don't know what to do. I'm so stressed and upset. I fear that I am headed down the same path as the oldest. I don't know what to or how to help him. Any advice or insight would be appreciated. San

I am looking for a lab in the Baltimore area that will perform the Elisa/act blood test. Any recommendations? Thanks! Sans

No psychiatric symptoms. The strep with Scarlett fever along with an increase in tics led me here. Not sure, though, that's why I'm asking. No family history of Tourette's.

I'm investigating potential pans/pandas with my 5 yo ds. My 12 yo ds has had tics for sometime so I'm familiar with that. 5 yo, though, had strep & Scarlett fever months ago, displaying tics, too, not necessarily at the onset but certainly before but nothing major. We do not have a genetic link as far as I know (maybe a cousin but who knows). Recently, more tics & inflamed tonsils. Neg to rapid strep not sure about the 24 hr one. Put on abx tues. tonsils still inflamed. He often has inflamed tonsils with no other symptoms now that I think about it. From what I've read on this forum, I'm not sure that he fits into this category. No real intense behavior change as many here have noted nor is there frequent urination. Could he still be pans/pandas? Not sure where to turn. Should/when can I expect to see if the abx make a difference? What else can I do? I am going to get his blood tested for allergies. We eat a clean diet. Thanks for any advice. San

When we started our journey with tics 7 years ago, we started with a ped neuro who, after just 30 min, was ready to medicate my ds at 5 yo with crazy drugs, I was shocked. No real questions about family history, diets, or anything. This left a BAD taste in my mouth & that's when I found this incredible forum with incredible support & knowledge. I had a friend who saw the same neuro for migraines for her dd & he offered up drugs immediately. So, I'm going to get my 12 yo ds & 5 yo ds tested through ELISA/ACT. Should I start with the basic panel of testing? Thanks!

I have 3 DS: 12, 9, and 5. Oldest ds has had tics for as long as I can remember. We have a clean diet, he takes a multi, tried Epsom, and the tics just wax and wane. They've changed throughout the years and lately it's a lot of hand/finger/arm stretching and bending and occasionally bending his back. He stretches his toes, too. I notice an increase when he's nervous, anxious, or excited. Middle ds has displayed some tic-like behaviors, like throat clearing and occasional neck bending, though I'm not sure if I am just hyper sensitive to all of this. Youngest ds is my main concern right now. He seems to be showing lots of tics: eye blinking and stretching arms out and/or up. He also clears his throat. Neither DH nor I had tics and the only one in the family that we think may have had tics is a cousin, though she does not have tics now. Youngest ds had strep months ago and scarlet fever and was treated with antibiotics. I've read and researched PANDAS but I have not seen any drastic behavior changes in oldest or youngest. Oldest just has typical adolescent attitude at times. I am so confused and do not know what to do at this point. I feel as if there has to be something going on with them since I really can't trace family history (except for possibly the cousin). How can all 3 kids display tics?? What kinds of tests should I try? Any advice would be greatly appreciated. I do not know where to start...Thanks!!

Bonnie, My son is almost 12 and I have seen an increase in his tics. He does not have braces, yet, though I imagine in the next year he will have them. I have seen an increase in his tics. Did your son's tics start to increase around 11 or 12? I'm trying to see if puberty is affecting him. He is physically immature but I know things are changing! Thanks, Sans

Cheri, If it is indeed TS, are you saying that magnesium should make somewhat of a difference? How long does it generally take for the magnesium to make a difference It's been a while since my son had magnesium but I didn't see a difference. Sans

Thanks. I guess I figured that he would have to be symptomatic! For your ds, the only symptom was the increase in tics? It's so hard to judge since some days his tics seem really bad and others just bad. Were your ds's tics of the same intensity all the time when he had the infection? I just keep thinking that it has to somehow be tied to allergies or an infection now that you mention it since we have not had a break with the tics. He would wax and wane. Also, I wonder with him entering adolescence, could this also be a result? He seems so far from that point physically, though. Thank you so much for your thoughts!!

It has been a while since I have posted. My ds is 11 1/2 and is finishing up the fifth grade. This has been a great year for his tics. They had been practically non existent this school year until the beginning of April. Since then, they have been very severe. He bends his back and his neck, and stretches his arms and his legs. His diet has remained clean, no illnesses, no new carpeting or painting, etc. We live in MD and allergy season is definitely bad this year, though he doesn't really seem terribly bothered by it, just itchy eyes. He is anxious/excited about starting middle school in the fall, though that's months away. Though he has commented in the past, he frequently says that he hates his tics. He complains in the evenings that his neck hurts. Whenever he has had flare ups with his tics, they have never lasted this long. I feel just awful for him and incredibly helpless. Any thought, ideas, or suggestions would be greatly appreciated. San

Thanks to everyone for all the replies. Well, based on what you have said, it doesn't appear that my ds has SID because his quirks do not interfere with his functioning. Maybe they are just quirks. So, where does that leave me now? Do I try to approach this with a behavioral psychologist with his anger issues? Just this evening, I said to my dh that I feel so ineffective as a mom because it seems that nothing works. When my ds had a meltdown tonight, and was very angry, he later on told me that he tries to take deep breaths but only after the fact, not during the moment. I guess it's good that he is trying and recognizes this. I just don't know what to do to help him. I feel like I am missing something. Any thoughts?

I am so sorry to hear about this. How long has your son been doing this? Is this behavior just at home? Have his teachers noticed this? You mentioned his Lyme disease. How long ago did he have it? Did he react similarly when first diagnosed with Lyme's disease? San

My ds had his 9 yo check up today. The ped is familiar with his tics. The ped mentioned sensory integration disorder. Has anyone gone through this? Ever since he was a toddler, he has been extremely sensitive to light, loud noises, tags, and other tactile issues. He would always rub his hand over things that were bumpy like my husband's stubbly beard, scabs, or even rough skin. I also read that temper outbursts are also part of it. He definitely has those and, coincidentally, his teacher just emailed me about aggressive outbursts at school. He does not like going to movie theatre since it is so loud. Many years ago, we had taken him to an IMAX show. He did not like that at all! He is physical and seems to constantly touch things. Not in an OCD manner. Whether he is pushing his brothers, or tickling his other brother, he seems to always need that physical stimulation. Could this sensory integration disorder be related to his tics? He is on a clean diet. Takes a good multi. In the past, we tried B6 and mag taurate but neither changed his tics. Epsom salts do not calm his tics, either. When he is anxious, nervous, or excited, his tics are much more evident. He is an anxious child...has always been. I am planning on getting him evaluated by an OT, per the ped's recommendation. Any ideas, suggestions, input, information would be greatly appreciated.

Cheri, If you use glass from the US or France, would ceramic dishes from France be ok? Thanks, San

What about dishes? I need to replace mine and everything is made in China. What about Crate and Barrel? Are their dishes ok? Any recommendations for brands or places? Thanks. San

[Laurie, Welcome! I have been dealing with tics for about 3 years now, though, like many people on this forum, much longer once I knew what to look for. Many things that my son did when he was a toddler (he's almost 9), were tics. It wasn't until he started with a neck tic that I was alarmed and made an appt with a ped neurologist. Even though you can't get in to see your doc for 2 months, don't despair. Just as Cheri mentioned, search the forum and the related threads because as many of here can attest, many of the neurologists are too quick to prescribe medication. Do your research. Has your son had these tendencies that you mentioned for a while? Did he do things as a toddler that were unusual? My ds constantly played with his belly button and would nuzzle his head into us...almost like he needed some sort of sensory thing. I don't know but definitely unusual. He was a hummer. When he started his neck tic at the end of kindergarten, then after seeing a neurologist who, after one visit said that if his tics ever became really bad, we could try medication, I researched and researched and researched. Everyone is different. All of our bodies are different. What works for some of us increases tics for others. Remember, he is still your precious guy. Try not to obsess over his tics, it will upset him more. Love him, hug him and kiss him. Try, hard as it may be, to be strong in front of him. Many of us have gone into the bathroom and just cried. Be strong for him. San

My ds seems to take deep breaths, particularly in the evenings. It is not labored as when you have been exercising but almost as if he is trying to take a breath like an asthmatic. It is not non stop but frequently for a couple of minutes. He doesn't seem to be in pain, I hear no wheezing so I am not concerned with asthma. Could this be a tic?

Do you need a neurologist to give an official diagnosis of TS? I am just wondering in case the need for an IEP ever arises for my ds or for anyone else.

I agree. Kind of strange that no doctor even suggested it was tic. Perhaps if the family started to think of it as that, this poor little girl could get back to school and her friends. It's a shame that she is removed from school.

I spoke with my ds's pediatrician regarding all of his tics. My ped is very supportive and seemed somewhat knowledgeable about PANDAS. He has essentially given me carte blanche in terms of ordering blood tests for my 8 1/2 year old. So, besides the basic food allergy panel that tests for corn, soy, dairy, and such, what other tests should I request? I am planning on testing both food and environmental. I am getting the listing of all the tests performed by the lab and basically I can choose. What tests should I ask for? Thanks for all of your help! San

Everyone here has been so informative and supportive. My 8 1/2 ds is still ticcing severly with his neck tics. The mag taurate is not doing anything and I just started B6. I would like to get him tested for a host of things. So where do I start? Who do I ask to run these tests? I want to explore the PANDAS route as well as allergies. He doesn't appear to have allergies but what do I know. The tics could be a manifestation of allergies. Will food allergy tests let me know all of this? What tests should I ask for? What kind of a doctor do I go to? My pediatrician?

Wendy, Ok. Thanks for the advice. Can my pediatrician do a strep test? What do I specifically ask for? Will the test then give all the levels that you mentioned? I visited the PANDAS board and read some info about the results and I was thoroughly confused. All of this stuff is really confusing and overwhelming. When I get results, I will definitely need help interpreting. Can he still have all of these elevated levels without ever having had strep? Thanks, San