kdnc5716

I'm sorry you have been having a hard time. It can be tough, and the "not knowing" is one of the hardest parts. Not knowing what's causing the tics, not knowing what will help, not knowing how the course will progress, not knowing where to turn. I'm new to these boards, too, and we are just beginning our journey with tics, so I'm not sure how much help I can give you, but you can always message me if you want support! My son is 4.5, and he has facial tics (grimaces, etc) and some vocal tics (clucking sound with his tongue and humming). The doctor confirmed his tics, but beyond that we don't yet have a diagnosis. We started him on a good multivitamin (recommended by a kind person from this board) and took him to see an allergist. He tested allergic to 17 things, none of them foods. We are going to be treating him for the allergies through immunotherapy, Zyrtec, Nasonex, and environmental measures. I also suspect that he has food sensitivities/intolerances, and that's the next route we are going to investigate. I've been doing a lot of reading lately, too. I recently finished Sheila Rogers' book and Doris Rapp's "Is This Your Child?", as well as "Raising a Sensory Smart Child" by Biel and Peske. None of our family or friends (excluding our pediatrician) know we are going through this yet either, and it can be hard to shoulder it on my own sometimes. I hope things start looking up for you soon and that your son is able to get some relief from his tics. Best of luck to you. Message me if you want support! :-)

Thank you so much for typing out your story, Clare!! I really appreciate it. It's so helpful to hear what worked and what didn't. (Glad you found a new pediatrician, by the way. I can't believe the way she treated you. It made me so frustrated just reading about it!) I'm pretty confident now that I want to stay away from Singulair if I can. I started him on the Zyrtec, and I'm waiting for insurance to get sorted out with the Nasonex. I talked with my husband and I think we are going to go ahead and start the immunotherapy, too. I bought allergy reducing pillows, and I'm looking for a decent mattress encaser. We are going to replace the window in his room (it's broken and lets in outside air). We want to buy a HEPA filter for his room, too. (I'd love recoommendations if you have one!) I'm really hoping that getting his allergies under control will help his tics a bit! Again, I genuinely appreciate both of your responses. I love the support I've found here! :-)

Clare, I can't see your reply for some reason, only the posts you quoted. I would love to hear your thoughts! :-)

This was really, really helpful. Thank you so much for typing all this out for me. It makes me feel better about the treatment plan the allergist outlined (minus the Singulair). I have been overwhelmed since yesterday trying to sort out everything I just learned. Thanks again!

Just for background info, our 4.5 year old son has not been formally diagnosed with anything yet. The pediatrician has only confirmed that he is having tics. I don't know if he has a transient tic disorder or is heading toward some kind of more specific PANDAS or TS diagnosis. Anyway, we had him allergy tested yesterday with a traditional scratch and intradermal test. He didn't have any tics while we were there, but his face did turn red during testing. He tested positive to 17 items, all of which were non-food. He tested moderately to highly allergic to 10 types of indoor and outdoor mold, grass pollen, ragweed, and cockroaches (yuck). He tested highly allergic to dust mites, dogs, and cats. They also said that he has mild/intermittent asthma, based on a breathing test they administered and the fact that he's had at least three episodes of wheezing. The allergist recommended that we start three medicines daily: Zyrtec, Singulair, and Nasonex. The Zyrtec can then be removed after a couple weeks. I'm hesitant about the Singulair, because the doctor admitted that it can have behavioral side effects. Any thoughts about any of these meds? My son has never been on a daily medicine (aside from antibiotics when sick and multivitamins), so I'm nervous! Might any of these things exacerbate his tics? Also, my son's tics have been waning the last couple weeks, and then today they flared back up again (facial grimacing, clucking, humming). Could this be from the allergy testing yesterday? It's weird to me that he didn't tic during the test, but he did tic starting first thing this morning. I guess he still has the welts on his arms though. Oh, and this leads me to my final question: what do you all think about allergy shots? The doctor highly recommended them, so we can try to contain his asthma symptoms and eventually have him on less or no allergy meds. It's a big commitment though, and I was wondering whether they will cause his tics to worsen? Does anyone know about this? Thanks so much for the help. I really appreciate it!

Thanks for sharing your story! This was helpful to me to read! I am going to ask our speech therapist her thoughts tomorrow...

Familyof5, thank you for giving me another possibility to explore. Many of your symptoms sound all too familiar. I appreciate the suggestions and support! I hope you all are doing better!

grabbed my eye--- I'm not sure what type of problems these are, but I went and dug up an old post of mine for you (re: stuttering at TS). My son's speech problems showed up as blocks primarily when he would start a word or sentence. Not sure if similar to yours at all, but my (frustrating) experience was that the speech therapist wanted to "blame" the speech problem onto the TS, as being *nothing* she could do about the TS---I should put him on meds----and, as a result, he went 4-5 years with severe speech problems, til I took him to a different speech therapist---and he learned some techniques that actually helped him become fluent. He's 26 yo now, and has been completely fluent since a year or so after he started with that other therapist......... ((((more hugs!)))) and best wishes!! (A FWIW story for you, anyhow.......) Thank you for the information, Laurena! That is interesting. My son was initially in speech for just articulation problems, such as not being able to pronounce "f," "s," a bunch of other sounds, consonant blends, etc. He's gotten better, but he's still in about the 25th percentile for articulation. He has since developed some problems starting sentences/words as well. For example, he'll start a sentence and say stuff like "I...I...I, I don't, I don't, I...I don't like broccoli." It's not something he does all the time, but my husband and I definitely have noticed it. We actually have a speech appt tomorrow afternoon, so I'll ask about it then. I hope you and your son are doing well!

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero?

Chemar, thank you for the list of links! I will take a look at those over the next couple days. Hopefully those will give me a jumping off point for approaching this. I just feel like there is so much info out there and so many decisions to make about how to proceed that it is overwhelming at times. I appreciate the assistance!

Thank you for the response, Ozimum! I will look at the PANDAS threads in this forum. I definitely haven't ruled out PANDAS yet. I don't think our pediatrician is an expert on PANDAS, but she acknowledged it as a valid diagnosis, gave me information about it that aligned with what I had read online, and mentioned that she attended a lecture about it at a medical conference. I guess I was impressed about how much she knew, based on what I had read online about doctors being dismissive about it. I think if we decided to explore the possibility of PANDAS further though, I'd have to find someone else, like you mentioned. I really appreciate you taking the time to respond to my post. I am definitely interested in trying to help my son's stomach/digestive issues to see if that helps him feel any better, too. I'm curious about what I've read on GFCF, especially. I do think it is possible that he is sensitive to gluten and/or casein.

Hi, everyone! I'm new here with questions for you all. I would love any advice or information you might have for me. My son is 4.5, and I think we are heading toward a Tourette diagnosis with him. I don't know of any Tourette Syndrome in my family, although I do have generalized anxiety disorder and developed OCD symptoms when pregnant with him. My son is kind of a strange case, I think. He developed eye rolling several times a day at around 11 months, when he had his first ear infection and cold. He was given a EEG, which came back clear, no seizure activity. The eye rolling went away after a couple weeks, but it came back in spurts every few months. From what, I've read, it seems like this is too early to develop tics? Or not? Anyway, this symptom pretty much went away about a year ago, although it's possible he just masks it now while rubbing his eyes. I don't know? (He was also referred to a pediatric opthalmalogist, who said his vision and eyes were fine, and that it was probably just allergies.) Anyway, I don't know if all this is connected, but I wanted to give you the back story in case it is important. Anyway, about six months ago, I started to notice what I thought were tics in my son. He kind of scrunched up his face on one side, and it looked kind of like a mannerism, like he was thinking. It's very noticeable to me now, and he'll actually scrunch up one side of his face, and then the other, and then the other one again, many times throughout the day. It's worse when he's stressed, sick, or tired. His behavior seems to get worse at these times, too. He's more tired during the day, and he sometimes angry outbursts when he lashes out at us. He also has more accidents during these "waxing" periods, too, poop accidents during the day and wetting through at night. I went to our pediatrician without my son a couple months ago to discuss my concerns about his tics. (I didn't want to take him, because I don't want him to be self-conscious about these tics. I never have pointed them out to him. Is this okay or should I talk to him about this?) Anyway, she said that his face scrunching sounded like a tic to her, and just to watch him for vocal tics. (I also asked her about the possibility of PANDAS, and she seemed well-informed on this diagnosis, and she said she didn't think it was in his case?) Well, over the course of the summer, our son has started to have what I think might be vocal tics. They switch up more than his scrunching, though. He's done this humming thing for a couple days, and a tongue clicking thing, and now, most recently, this almost-kissing type sound. He'll intersperse his speech with it. (Our little guy has articulation problems, by the way, as well, and has seen a speech therapist for over a year.) Finally, I'd like to mention that our son has anxiety problems as well. He gets really nervous during some TV shows or books (and I mean, things like Dora not Transformers!) and comes up with creative things to worry about in his own head, too. He starts biting on his shirt collar or ticcing when he gets nervous. Oh, and one other thing: First, my pedi has always referred to him as an "allergy kid." Eczema, and now reactive airway disease. Also, his skin breaks out when it comes in contact to grass and various foods, such as ranch dressing, cinnamon, ketchup, etc. His stools have never ever been fully solid. Hopefully this isn't too much information, but they are usually formed but still loose/weird looking. He has never been allergy tested, but I wonder if food or other allergies could be making his problems worse. Should we have him tested or do an elimination diet of some sort? My questions for you all: Does it sound like we are headed toward Tourette? I know you can't diagnose him, but this "watch and wait" game is killing me. I'd love to have insight from people who know what this syndrome is like first-hand. Also, if this IS Tourette syndrome, does it mean that his case is going to be more severe since he is starting on the younger side? Is there some correlation there? Finally, if this was your child, how would you approach this? I mean, I don't really just want to wait until he reaches that one year of symptoms milestone before I do anything, you know? I feel like I should be doing something. Thank you all for listening, if you made it this far. I know this is really long and disjointed. I've never shared this with anyone before (besides our pediatrician). I would really appreciate any information/advice/support you have for me. My boy is so sweet, special, smart, and kind. I want to do everything I can for him to help him.