My 5 year old daughter started what I now know are symptoms of Tourette Syndrome at the age of 2. I want to say it started with stuttering then excessive and seemingly forced eye blinking. Because those particular "tics" stopped I contributed them to normal childhood tics however every few months some new tic would begin i.e humming sounds, smelling fingers constantly.... Now at age 5 she grunts, snorts and still makes humming sounds. (Also, her father has TS - apparently it was severe as a child, however, had he not told me I would have NEVER known - he as very mild symptoms as an adult).
I believe she also has OCD as she gets VERY upset with me if I do or do not do certain things her way. I know that may sound normal for a child her age but I feel like this is different. It is so often and usually ends with a temper tantrum over the smallest things. At first I thought it was a behavioral issue or that she was just extremely strong willed, but now i am wondering if it is OCD and that why she freaks out if she can't get her way. Oh and it is not over things like she can't have a piece of candy, it seems to be for weird little things like I closed the car door instead of allowing her.
Also, I am wondering if there is a correlation of early onset and the severity of tourette syndrome? My daughter does not seem to have a severe case SO FAR, but I am so concerned that it might worsen especially since she started showing signs at 2 YEARS OLD! Any research on this?
Unfortunatly I do not know how to answer your question but I thought I would share with you what I have learned from our son. I have a son who is now 8 years old and we have been told he has a tic disorder. We first started noticing obsessive blinking when he was about 6 years. He came down with strep throat and we started noticing this right after he got over strep. I figuered it had something to do with the strep but after about two months and things did not improve I figured he had to be picknig up an ussual habit. Things got better after about 4 months and seemed to have gone away. Then like it happened over night the blinking was back and now was shrugging his shoulders after he blinked. One thing lead to another and the shrugging stopped but after a few months he started obsessively clearing his throat. I really did not know what to do.....we knew we had to address this one way or another but how? First we tried talking to him and asked him what was going on. He told us that he knew he was doing these things but could not help it. This did not make sense to me and I thought maybe he was doing this for attention. We tried several different things to help him get control over this. (not knowing what "this" was) This was very frustrating as a parent but I knew this was not something we should try punishing him over. Anyways when all of our tricks failed we took him to see a ped nuerologist in Chicago. He gave us a 30 minute crash course in this disorder. I was shocked at his diagnosis but was prepared for something. Our son has been diagnos. with a tick syndrome. I asked if this was tourettes and the Dr told me that is an old term that they only use now if a child/person is affected by all three ways a person can be by tourettes. Physical ( walking 20 steps turning around and repeating it over and over) Verbal ( the swearing or the vocal disturbances) and the semi non-voluntary movements like blinking shrugging shoulders ect. He explained that the term semi- non voluntary is because people can sometimes hold off on blinking (things like blinking) for about 20 seconds if they try hard but once they stop resisting the ticks they make up for what they did not do and things are worse for a little bit. This is something we have tried with our son and it holds true. He did not make it for 20 seconds but once he stopped tring he had double ticks until he felt they were out of his system???? Our son seems to go through stages some days he does not seem to have any ticks at all but the other days he cant seem to stop. We have noticed certain things affect this syndrome for him. He has a bed time of 8 pm every night and if he stays on schedule and gets enough sleep we see very little ticks. If he is getting sick we ussually see an increase. I try to have him eat as healthy as I can and I see a differnce here too. If we are busy and reley on fast food the ticks seem to be more frequent. Lately we have been noticing an axiety problem with him. If he thinks he is in trouble he starts to cry and gets really stressed out. Agien this is when we will see ticks increase do to stress. The Dr we see did explain that there is mediction out there but they only supress the ticks. There are risks and side effects to taking any medication and at that time we did not think the benifit would out weigh the risks side effects. Lately now that we see he is really becoming affected by the anxiety we have been concidering medication but he is so young that medicating him is a last resort for us. We have been very open with him and have explained that there is medication out there. Not that he fully understands the medication part of all of this but I do feel it is important to keep him as involved as I can. We told him at any time if he feels he would like to try the medication please tell us and we would talk about it. He never has brought it up. The Dr also explained that a very hard part of this diagnosis is how other children will treat him. He does talk about kids asking him Why does he blink and do some of the things he does. He tells them he doesnt know why. The peer preasure is there but i think he handles it well. We have offered to go to school and talk to his classmates about this but he doesnt think this is a good idea. I understand. His latest tick is ironically smelling his fingers. This is a strange one but I find it interesting that your daughter does that too. His nuerolngist did expalin that alot of times children do outgrow this and we are really holding on to this. Things have not gotten any worse with the exception of the anxiety for him. It seems pretty consistant just the ticks vary. We have only noticed him affected by the non-voluntary
I accidentally hit the post button. Sorry. The Dr explained that if this was going to develope ino full tourettes syndrome that he would progressivly get worse. Something interesting ..the Dr also told us that strep throat sometimes is a trigger for this. Not a cause just would trigger the onset of this. We have never talked to another family affected by this. I have seen it on TV but only the extreme cases. If you have anything that you think is interesting or helpful I would love to hear it. If you dont mind ...Im interested in hearing how your husband is affected by this as an adult. When was he affected the most from this ( younger years or any differnet in teen-age years?) I thought I read somewhere that it eighter gets much better or worse around puberty.
My husband has TS - he starting his tics when he was about 6 - or at least that is when he remembers them or when people started pointing them out to him. He had a rough time being diagnosed as his step father thought he was trying to get attention. He was finally diagnosed and did end up on some meds when he was a kid (into his teen years I believe). I asked him a little about this today so I could give my "educated" 2 cents to you. He says it got worse for him into adolescents - and I know he had a very hard time with other kids and acceptance, etc. He started to see a difference in his teen years and went off his meds. As an adult, most people don't know he has it. I notice his tics, and they still change from time to time. He shrugs for a while, then I notice him clearing his throat more or sniffling more - I guess every few months it cycles thru to something different. But again, nothing really obvious to anyone unless you know. I don't know if I am helping your questions at all, but this is my experience with it. We are expecting our first child in June, so I'm hoping she does not inherit the gene, but if she does, we'll have a head start of diagnosis. I know we have a 50/50 chance of him passing on the gene and then something like a 75% chance of symptoms presenting themselves in a girl and a 95% chance in a boy. The severity is all a **** shoot from what I understand, just because my DH has never had any severe sypmtoms doesn't mean anything. I have never heard of any correlation between the age of onset and the severity but I have only spoken to a genetic counselor about it as a potential for our child, not an actual neurologist with any questions. Good luck and keep me posted what you find out, I'd love to keep up on things since I could potentially be going thru the same thing in the future....
I am so glad to hear everyone's stories. Well, I will start off with my husband's story since we know how he turned out. I think that is what makes it so hard for us parents of young children with this - the future is unknown. Well this story had a happy ending....
OK, I remember when he first told me he had Tourette's - I literally laughed in his face bc i thought he was joking. Here was a man I had been dating for some time and NEVER noticed anything unusual and he was telling me he had TOURETTE. Well, of course, once he told me - I did start to notice some tics - but they were tiny, insignificat "tics" - I even thought they were kinda cute. He would tap his pointer finger and thumb together and sometimes shrug his shoulder muscle (but not whole shoulder) - it was so unnoticeable.
So - when i got pregnant i asked my DR if there was a chance my daughter might inherit this - and he told me "NO, it's not hereditary"- CAN YOU BELIEVE IT!!!! (he has old and apparently not up on the latest research) SO, when at 2 my daughter started having tics - it didn't even click with me. Around 4 they started to get worse (constant humming sounds in a pattern, CONSTANT smelling her fingers, squeezing her eyes shut, etc) and one day it just dawned on me. SO, I told her pediatrician who looked at me with a blank stare and pretty much left the room - nice huh!!! On my drive home i called her grandmother (husdband's mom) and said, "I think Sierra has Tourette Syndrome" and she said to me" Yes, I think she does too". It broke my heart bc she knew from own past experience but was afraid to say anything to me - I think bc it broke her heart too to have to go through this again. So, of course i started asking a million questions bc before this i never even thought to think about tourette. I mean her dad and i spoke briefly about it but you have to remember this is somehting he hadn't dealt with or probably even thought of in over 15 years and even then he always told me his case was SO mild that he barelly had any tics. WELLLLLLL - guess what!?!? That wasn't true! Not that he had lied but he had totally blocked out the seriousness of his Tourette. It turns out that his tics were not mild but actaully SEVERE. His mom told me he would jerk his arm against his stomach until he rubbed his skin raw, amongst other things that would change month to month. Of course, i started hysterically crying after hearing this, on top of the fact that I was completely shocked. All i could do was picture my little girl doing these "weird" things. She then went on to tell me that they had him on Meds such as Haldol which turned him into a mini zombie. I couldn't believe what I was hearing (especially since i thought he was "SOO mild" and what could potentially be my daughter's future. (Good news ahead - don't worry).. Well, around 9 years old they got him on a Klodipine (i think its called) PATCH. This was the answer for him. His tics slowly subsided,he wasn't a zombie and by age12 the tics were almost completely gone. ALSO, He never had any social problems at all (although he apparently blocked a portion of his childhood out since he had no recollection of the sever tics), he was super popular in high school, played sports, smart, the whole 9 yards. His mother told me his tics started almost the same time and same way as our daughter's - weird huh - that's why i wonder if there is a deeper correlation. Her Ped Neur. didn't say anything about that - she also said they really don't know too much about it in the grand scheme of things and that it is a very interested disorder. SHe also said if your child had to have a Neurological Disorder this was the one to have. I guess that made me feel a little better. OH - I also learned that the gene has to be on BOTH sides. It doesn't have to necessarily be TS but something that falls into this category which are other tic disorders, OCD, ADHD, and others that I can't remember. Minor OCD runs on my side of the family. As far as my daugher - she waxes and wanes. She doesn't really have any motor tics (yet) - mainly just clearing her throat and she now snorts a little when she sniffs. I have also noticed her tensing her shoulder muscles while clenching her jaw and tightening her fists - she does it for a second then stops and has only don't it a couple times ( I wonder though if this will be her newest tic). She is still young (5) so I don't think there is a problem socially. HOWEVER her teacher's used to tell her to be quiet which infuriated me when i found out. I immediately told them what was going on and there hasn't been a problem since.
I guess for me I am hoping that bc my daughter's TS started off exactly like her dad's that it will end the same way - almost gone by puberty. Puberty seems to be a major benchmark for this. OH, last thing - anyone's child showing signs of OCD, as well - mine is and I would like to hear someone else's experience with this. Behavioral Issues or OCD - I can't figure it out.
I know it's the year 2010...but I found it rather interesting to hear you say that the doctor told you that Strip throat was actually what triggers Tourette syndrome? My daughter is twelve years old now and was diagnosed with Tourette syndrome at the age of 6 or 7. But she did in fact have strip throat a few times prior to the diagnosis. I wonder if there's any truth to that and I'll have to research that very soon. Thanks for all the post!
Hello! My Husband and 8 year old Stepson and my 12 year old Stepdaughter as well, all have TS among other disorders. The Strep throat connection is called PANDAS. We knew my stepson had TS from the time he was about 2 or 3. My Husband also had his go almost completely away during his teen years and a BAD flareup in his early 20s. There is also so many other things that can and do go hand in hand with a TS diagnosis. OCD, ADHD, just to name a few. I have two kids with my Husband and since 2 of his 4 have already been diagnosed, I know it wont be long for our two.... They are 1 and 4.
Please google PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. I have a daughter with Tourette's Syndrome (6), and my two year old son is already showing signs. My daughter's neurologist ruled out PANDAS, but I think it is very interesting that your son's tics started right after a case of strep. It is very possible that your son's may fall under the PANDAS category which I've heard is somewhat treatable!!
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