Mom04

Chemar - and everyone else - you are awesome!! So sweet to be helping and caring for us, whom you don't know. I will definitely keep you all posted. I know how much work goes into being a mom and/or dad, and especially a parent devoted to a beautiful child with special needs (if that's the 'right term'). Laurie

I will definitely get him in for a strep test, thanks. And, yes, I'm keeping the April appointment for a 2nd opinion. In the meantime, I phoned a psychologist that we met about a month ago when we first heard from the school. He said he didn't suspect Tourette's either, but told me that we still don't have a diagnosis (which is true). So, he's willing to work with us to first, figure out what is going on, then come up with a "treatment" plan.

Ha! I agree! Of course, I'm such a "wuss" and assume the doctor knows best, so I didn't push it like I thought I would. Before the words "Tourettes" and "tics" came into our vocab, we met with a wonderful Psychologist. I'm thinking I'm going to call him again, because, let's face it, therapy can help everyone! I believe he specializes in Child Psychology, so that's a good place to start anyhow. Do you think it was smart that we met with a Neurologist first? (As opposed to a Psychiatrist, which some people recommended?). By the way, after they said my son doesn't really have 'tics', I said to them....well you didn't see or read my whole list yet...and proceded to ramble on and on about the "simple" motor/vocal tics like throat clearing, spitting, eye blinking, etc. They still said, "nope". ??

Thank you everyone for your tips and advice. After spending 2 1/2 hours with the Neurologist last night, they said they are 100% sure he does not have tourette's. They listened to our history and symptoms and performed some physical tests on my son. They said that his behavior isn't really "tics" either. That "tics" are more simple, I guess is the word, and my son uses complex phrases that make sense. I'm probably writing this wrong, but hopefully you get the gyst. So....their diagnosis? Impulse control, hyperactivity and some social anxieties. As I've stated before, Tourette's really didn't seem to fit...at least with the stuff I have been researching on my own. Although I am tremendously relieved, I'm still a bit weary because his actions really seem involuntary. But perhaps that comes along with difficulty with impulse control? They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay. If therapy helps, then great. In the meantime, I also plan on taking all your wonderful advice and starting with some supplements and a diet change. I had the opportunity to sit in his classroom this morning, and he was awesome! Nothing like they described, but it could have been because I was there. Laurie

I'm starting to get that impression after reading on this board. I plan on DEMANDING a strep test and a discussion on PANDAS, because as I said, there is no history of any neurological disorder in my family. Hopefully, the Neorologist at Children's Hospital is a bit more educated since he deals with just children and this is his specialty.

Thank you Dut! Would you mind posting the link to the OCD behaviors topic? I'm having a hard time finding it. We finally got an appt today at Boston Children's with a neorologist. I can't wait, but I'm nervous, too. I am going "armed" with tons of notes and suggestions (right from this forum!!) so we can give the Dr. an accurate background, and hopefully, will come home with a realy diagnosis after careful consideration of everything I have to say. I'll let you all know how it goes. Thank you! Laurie

Thanks Colleen. If a strep test comes back positive, does that mean that, for sure, that is what's causing the behavioral change? Could it be possible that he's had strep for over a year...because he's been acting this way for a while. Would simple medications/antibiotics get rid of this, or once you have PANDAS, you have it for life? I will check out the PANDAS site, too, thanks!

Thank you, thank you! The more information I gather....the more I'll have to get him a proper diagnosis. His Neurological appt is in April (boo!), but the DR first suggested a psychiatric screening. Just doesn't seem to fit with our family history, so I will definitely be reading up more on other causes. As for Lyme....is it possible he got it without the initial signs, like high fever, aches and pains and the rash? Because I don't remember him ever showing these symptoms. I will definitely have him tested for strep, too - I only remember him having this once in his short life, but maybe the antibodies are still present.

Thank you, Kengela - yes, he has been acting this way for well over a year...maybe even longer...with the exception of new thinkgs like the spitting and licking. It seems to be getting worse and more frequent, but I think that is because he just started school this year and the daily excitement and/or anxiety is probably prompting this. I can't remember when this started....it seems like he's been this way forever, and like you said, we just thought it was his personality. He doesn't get sick often, but I can remember the last time he had a very high fever, they gave him a strong shot (not sure what it was) because he doesn't take medicine. Thing that could have something to do with it? Also...and ths is very shocking....I just read on here that Lyme disease can cause tics???? He doesn't have it, as far as I know, but I think that may be worth getting tested because his dad had a BAD bout this summer and was actually out of work for a while. We think he got bit in our yard. Thanks again for your words.

Hi all - I am still waiting for an appointment for my 5 year old son to determine what sydrome, if any he has. His school is concerned that he is showing signs of Tourette's. The only knowledge I have of Tourette's is my own research on-line for the past 2 weeks. Although it seems obvious that he has certain vocal and motor tics, I'm just not convinced yet that they stem from Tourette's (the main reason being there is not one person in my immediate family, or family history with any neurological disorder). I am not asking for a diagnosis - obviously I'll wait for the professionals. However, I was wondering if anyone might offer their opinion about the following tics that he displays: fake belching clearing throat - but only when excited, so to me it seems appropriate? spitting licking things (that shouldn't be licked, like signs, windows, etc) gulping loudly when drinking throwing any object he gets his hands on (toys, pencils, blankets, pillows) Hitting without being provoked using inappropriate phrase in school and at home - these phrase always include the word "butt", like "your butt smells" jumping up and down when excited and pounds chest getting on all fours, and "bucking" back one leg like a donkey almost loud screams out of nowhere....usually right up in someone's ear making silly faces - sticking tongue out, smooshing face with hands, sticking fingers in mouth and streching his cheeks out Besides the physical tics, I am also concerned with his extreme sensitivity - cries and yells the minute parents try to talk about what's "going on" or give him rules; cries during any transition....not just coming and going transition, but like telling him he has to brush his teeth, for instance, before bed. slamming doors interrupting conversations and getting exasperated if you don't respond to him immediately. Thank you so much if you respond - my husband and I are just so distraught right now and want to help him in any way we can. It's tough right now not knowing and we feel like we are in limbo and aren't sure how to react (or not react) - waiting for our appointment feels like FOREVER! Thanks again in advance for your opinion/advice.

Thank you, Cheri! There really is no history of any disorder in either family, so perhaps this is just tics due to something else. He doesn't show any signs of OCD and has only had strep once. I want this Doctor appt more than anything so we know what we are dealing with and can get my precious guy some help!! Thanks again for the reply, I really appreciate it. Laurie

Thank you both!

How does this control tics and why? Should I give my son (who hasn't been officially diagnosed yet) a bath in it, or is there some other way of using it? I'm so scared because my son refuses to take medicine in ANY form....liquid, chewables, dissolvables....takes a fit NO MATTER what flavor or method. I'm just hoping if he has to go on meds for the tics that there's a patch of some kind out there. But I was also just reading in this forum that magnesium helps?? Most of my son's tics are verbal, so how would this help? Thank you all!! Laurie

Hi everyone - just joined the forum today. I have been searching and searching for forums and help on-line for about 2 weeks. We suspect that my 5 year old may have Tourette's, but I'm so confused. Please forgive the LONG post, but I've been dying to get this off my chest and get some feed back from others. Here's a little background: My only son just started Kindergarten in Sept. Prior to Kindergarten, he just went 2 days a week to a in-home daycare, so this is his first time in an actual "school" system. The first week was tough....he cried everyday and every night. It was heart-wrenching to put him on the bus while crying, but I had to be strong so he'd get used to it....he has always had a tough time with transition. Anyhow, after only a week, he looked forward to going to school and he got a great progress report the first month, with the exception of "sometimes we have to re-focus him because he tends to wander off". Then about a month later, the teacher called and said that she's concerned with his "attention" (or lack of). She said he is very smart, and never mis-behaves, but is constantly moving. They have an OT in school who suspected (after seeing him a couple of times) Social Integration Disorder. I did some research on SID, and although there were some things I could relate to....like he hates water in his face, moves constantly, can't stand in lines, scared to death of all animals, etc.....most things didn't seem to fit. Just as I was saying this to myself, the OT called and said he doesn't "present" for Social Integration...but he is showing signs of tics. She asked me if he throws things at home. ALL THE TIME!!! She asked me if he uses the word "butt" at home. ALL THE TIME!!! Etc., etc. So, we made an appt with a pediatric neurologist but couldn't get in until next April. I'm devastated because the tics seems to be getting worse and I'm not sure what I'm supposed to do (discipline, not discipline, etc) in the meantime. LONG story Longer....Just wondering if you all think these are signs of Tourette's. Strange thing is, neither my family nor my husband's has any history of any disorder: screams real quickly for no apparent reason says "fresh" words constantly (not just every now and then), like "drag my butt on the ground", your butt smells, booby throws things all the time....toys, blanket, food, pencils in school, knocks things over fake belching clearing of throat when he is physically excited (like when he plays the drums) spitting on occasion, although I haven't seen this myself. Licking things...like shoes, signs, windows I just don't know what to do and waiting 2 months for the doctor is killing me. My sweet, smart, musically gifted boy, is having trouble daily in school and it seems to be getting worse. I'm thinking maybe because he's stimulated so much at school. THANK YOU SO MUCH IF YOU READ THIS FAR!! I've had my melt downs and crying and now I'm ready to just get him help. Laurie