hsingmommy

Our son is 6yo, and we had to explain because we were going to see the ped neuro. Our DS is afraid of getting shots and "finger pricks" at the doctor, so he freaks out. We knew he'd freak out even more being as he wasn't seeing his regular pediatrician. We just explained that we were going to see someone who studies the brain. We've explained his extra "movements" to him (he and I call them tics, but we do not draw attention to them...that's just the terminology we use -- DH calls them "movements"). We have also explained that we will be trying to include supplements and changing our diet/nutrition habits in order to help his movements. We've made it clear that they may not disappear totally, but we're praying they will lessen or become less noticeable. He sat and watched "Front of the Class" with us this w-end, and it was a GREAT movie that explains it all very well. He said later..."mine aren't that bad. I don't do that." And yes...he's right. His motor/vocal tics are not like the guy in the movie; however, we explained that no two TS people are the same. HTH!

We did see a pediatric neurologist after our pediatrician made the referral. However, it was a complete and utter WASTE OF TIME! Our ped said that he did see the tics, but they were not that noticeable. This has been going on since DS was 4, too. So, the ped suggested we see the ped neuro so that he could assess the situation. However, all the ped neuro did was ask us what the situation was. When I explained it, he did a brief reflex test with DS, and then gave us a "clinical diagnosis" of TS based solely on what I told him. We are in the process of seeking a 2nd opinion because we do not have a history of TS in our family, and we're not sure that it is TS. We believe it could be caused by other factors (allergies, hormonal abnormality, etc). So, we're hoping to get a more thorough and extensive eval from another doctor.

Chemar -- there are no cases of TS in our family history that we are aware of...that's why we're really puzzled by all of this. Granted, there could be some distant relative that has TS that we have no clue about, but there are no cases that we know of. We, too, think that maybe there's more to this situation. Our son hasn't even been tested for ADHD (although I won't argue that we've wondered), and the doctors haven't done any other testing either. No allergy testing, hormonal testing (refer to other thread), etc. We are so hoping that a 2nd opinion will be more thorough and extensive and look at our WHOLE child and not just the tics. I think my DH is headed into the pediatrician's office this week to express his concerns and get the ball rolling faster. I have heard about PANDAS, but from what I can remember, our son has had strep once. So, I'm not sure if that could be related or not. I would hope that the doctor would again do testing to rule it out. We're also curious about some sensory issues that we've noticed and are just now making sense. Our DS would freak out and have crying fits about his socks aggravating him. He'd also complain about the tags in his shirts. More recently, he has expressed complaints about his underwear bothering him. So, we're not sure if there's an underlying sensory issue as well. It's all so darn overwhelming, and it's all so new to us! Thanks for your replies! Sherrie

Okay, I was skimming through the book Children with Tourette Sydrome A parent's Guide, and I was reading the different reasons for tics. One of them mentioned hormonal abnormalities. Have any of you connected this with your child's tics? If so, how did you go about making that connection? We noticed at about age 5ish that our son had awful body odor. Now, this wasn't just boy sweat. This was full-blown body odor like an adult or pubescent teen. We brought it to the doctor's attention, and he of course did the obvious check for hormone issues (checking for hair under the arms and in the groin area, etc). He didn't notice anything out of the ordinary and told us to just keep a check. Well, my husband eventually started smelling it as well. This has continued, and I would have never thought that it could lead to tics. Also, he's a big boy. He's 6.5, 49 inches tall, and 70lbs. He's never really been overweight...just STOCKY and built like a football player. He's been like this his entire life. Anyway, I was just curious if any of you had dealt with this and the connection. Or am I way off-based??? Sorry, we are new to this and have a new "clinical" diagnosis of TS based solely on what I told the ped neuro. He didn't do any testing or anything. We ARE seeking a 2nd opinion. Thanks! Sherrie

Hello everyone! Our son was recently given a "clinical" diagnosis of Tourette Syndrome based solely on what I told the pediatric neurologist. This has outraged my husband and I. We thought he would be more thorough and do further testing to rule out anything else. Our son started having tics at age 4 and started with eye blinking/twitching. It then moved on to facial grimacing and more recently arm/leg jerks. He's also had a habit of sniffling (hard to rule if it's allergies or TS) and throat clearing. So, after I shared the story with him, he said, "I will give you a clinical diagnosis of TS. It will wax and wane, and it can be mild, moderate, or severe. There's no need for medication b/c it's not interfering right now (we are adamant about no meds anyway b/c of everything we have read), and there's no need to come back in unless you feel you need to see us again later on if things change." He's now 6.5, and he has had periods of non tic movement. However, we aren't sure if that was because he suppressed it or if it did it's waxing and waning. Until we knew what we were dealing with, we unfortunately would fuss at him for his movements. Now that everything has come into place, we now accept that it is what he does. He has good days and bad days. There are days we hardly notice his tics, and then there are days when everyone he's around notices them. We're heartbroken to see him going through this, but we also know that God has a plan. We are in the process of seeking a 2nd opinion because we were not happy with the pediatric neurologist. We know that we will probably have to drive a good 2 hours north for that 2nd opinion, but we're fine with that. Anyway, I just wanted to share a little of our story and introduce us. Thanks for reading! Sherrie